Getting government support or not (non-financial)

[marc_101]

I'd take it. Sounds like it could teach you skills. And if it comes to an end, you then get some short-term support.

The home option seems good too. If that's where you spend most of your time, it could help you find a structure there. The con side is not going out.

I need to move to Scandinavia

 

[WhitewaterWoman]

I worked in assisting people to find support services of various kinds, some in the home and some in the community. The support workers were all supposed to be teaching skills and fostering more independence. This would be in the USA.

That said, not all support workers were as good as others. In the USA, you can request a change in the staffing of supports if one person is not working out, maybe another one will.

Personally, based on what you have written so far, I would say to take the long term support worker. You can probably always go back or even quit the service if you don't like it.

 

[grommet]

I had a meeting with my social worker today (there is no better translation I know of), she is a pedagogue helping me with things like task breakdowns, planning, communication, etc.. (like I can contact her if/when I need e.g. if I get a letter I don't understand, or know how to answer, and then we have regular meetings every 1-2 weeks to make sure I know what to do for the next weeks) I have always known it was a temporary thing I could have her, even there wasn't any set limit on how long she could help me.

Today she told me her time with me is coming to an end, and that it is time for me to make a choice, she could make an application for me to get into the long term support system, where I will have someone specialized in autism come to my home to help me with the same things, so more or less what I get now, just with a different person, and it will be in my home instead of me going out - she couldn't make promises as she is "just" a pedagogue, and it is someone else making the decision, but told me it's a 98% chance I would be approved for the new help - the alternative is that I go solo (without support) after 4-6 sessions more with her, if I can't cope I can come back an make a new request for temporary support after some months, so kind of start a new temporary cycle, but it will be with whoever is available at the time.

I'm inclined to accept the offer and try to switch to the long term system, but would like to hear what experiences others have with getting this kind of help, like do you also need/get this kind of support? do you see it as long term beneficial? One worry is if I'll be in a worse position, if I get used to the support, and then it ends because of some budget cut one day... any thoughts are welcome

I am so emotional reading this because I have felt desperate for the kind of support you get. Where I am that support does not exist.

I think from what you said, you should go for long-term support. I think you are very lucky to have gotten the help you have. My ex girlfriend used to do those things for me. I looked in the social service system we have and spoke to many nice people but every one of them said they do not know anything about autism or anyone who does.

I hope you keep getting support.

 

[Aspychata]

Guess you can start in home and then transition to office visits? Or the other way around. Does the office or home visit come with a cut-off date, they may function on totally different breakdowns of what happens. Do you think you can ask for clarification between the two maybe?
To help you decide which way to go?

 

[kriss72]

Guess you can start in home and then transition to office visits? Or the other way around. Does the office or home visit come with a cut-off date, they may function on totally different breakdowns of what happens. Do you think you can ask for clarification between the two maybe?
To help you decide which way to go?

Oh, I see I wasn't clear, my current (temporary) support, can be either office or home based, the longer term support is home based, which is fine with me.

Knowing multiple rounds of temporary support will be with a new person each time and meaning I would need to wait some months to fall apart, then go to their office to argue that I need help, wait for a temp support worker to become available, getting to know that person and letting them know my needs... I mean hearing what others get, I feel very lucky I have the option, but maybe it's better I just admit to myself I will benefit from more help than what I can get from the temporary support system.

 

[kriss72]

I am so emotional reading this because I have felt desperate for the kind of support you get. Where I am that support does not exist.

I'm sorry to hear you are not getting the support you need, I do feel very grateful even in my country's system, for the support I have gotten (both from my insurances and the public system) - the stars aligned for me in that perspective.

 

[grommet]

I'm sorry to hear you are not getting the support you need, I do feel very grateful even in my country's system, for the support I have gotten (both from my insurances and the public system) - the stars aligned for me in that perspective.

What you said about the help you get is exactly the help I need. My girlfriend would go with me to appointments and I would hand her something I was given to read. I could not understand it and she would tell me what it meant. She would do the same in meetings when the other person would speak or ask me a question. To me it was a wall of words and sounds that meant nothing, I had no idea what they were saying. She would translate.

I have lost money with my utility company because I did not understand how to use the program that would lower my costs. Things like that affect me for years. Alone, I agree with people say to me so they don’t get mad but I do not know what they said and I am agreeing to. I find out later in the consequences. It is not nice living this way, unpredictable.


Hearing you have someone help you felt so good, I imagined having that myself. It is what I looked for. People are nice but all of the social service agencies and workers I spoke with said they did not know about that. I think it must be life changing for you to have help like that. I am glad.

 

[Outdated]

What you said about the help you get is exactly the help I need. My girlfriend would go with me to appointments and I would hand her something I was given to read. I could not understand it and she would tell me what it meant. She would do the same in meetings when the other person would speak or ask me a question. To me it was a wall of words and sounds that meant nothing, I had no idea what they were saying. She would translate.

That's exactly the type of help these assistants give, I wish that sort of service was available to you in the US, Grommet. I know a few people that have really benefited from that kind of support. You can even get them to accompany you when you go to social events, the idea being that it's not healthy for us to never go out and socialise.

 

[Mary Terry]

What you said about the help you get is exactly the help I need. My girlfriend would go with me to appointments and I would hand her something I was given to read. I could not understand it and she would tell me what it meant. She would do the same in meetings when the other person would speak or ask me a question. To me it was a wall of words and sounds that meant nothing, I had no idea what they were saying. She would translate.

I have lost money with my utility company because I did not understand how to use the program that would lower my costs. Things like that affect me for years. Alone, I agree with people say to me so they don’t get mad but I do not know what they said and I am agreeing to. I find out later in the consequences. It is not nice living this way, unpredictable.


Hearing you have someone help you felt so good, I imagined having that myself. It is what I looked for. People are nice but all of the social service agencies and workers I spoke with said they did not know about that. I think it must be life changing for you to have help like that. I am glad.

Grommet, you are a very special person to me. You can private-message me anytime if you need help with something.

 

[kriss72]

That's exactly the type of help these assistants give, I wish that sort of service was available to you in the US, Grommet. I know a few people that have really benefited from that kind of support. You can even get them to accompany you when you go to social events, the idea being that it's not healthy for us to never go out and socialise.

I don't think social events are part of what I can get help to (my kid have a different kind of support person that can help with that thou), but she can follow me to meetings, and talk to others for helping me, like making the application for more long term support.

 

[Outdated]

I don't think social events are part of what I can get help to (my kid have a different kind of support person that can help with that thou), but she can follow me to meetings, and talk to others for helping me, like making the application for more long term support.

I went to a few Meetup events for autistic adults last year and two of the people there had assistants with them, I don't think you could get an assistant if you just wanted to go to the pub for a beer though. The meetup events were incredibly boring though, and the most interesting people to talk to were the assistants.

 

[kriss72]

What you said about the help you get is exactly the help I need. My girlfriend would go with me to appointments and I would hand her something I was given to read. I could not understand it and she would tell me what it meant. She would do the same in meetings when the other person would speak or ask me a question. To me it was a wall of words and sounds that meant nothing, I had no idea what they were saying. She would translate.

That sounds really nice and helpful! Sorry to learn you don't have her anymore.

I have lost money with my utility company because I did not understand how to use the program that would lower my costs. Things like that affect me for years. Alone, I agree with people say to me so they don’t get mad but I do not know what they said and I am agreeing to. I find out later in the consequences. It is not nice living this way, unpredictable.

I also messed up when I had to give up working full time, if I had done some things in a different order I could have kept my full salary (I had an insurance that could have covered) but I lost that option because I didn't understand what I was doing.

Hearing you have someone help you felt so good, I imagined having that myself. It is what I looked for. People are nice but all of the social service agencies and workers I spoke with said they did not know about that. I think it must be life changing for you to have help like that. I am glad.

That is actually "fun" because when I went to the social office with my diagnosis papers saying I need a support person I was rejected, being told there was no such thing but I could get some sessions with a pedagog, when I got her, she could suddenly do a lot of things, the first thing she did was to find out what kind of help I actually needed, because I didn't know my self.

 

[grommet]

Grommet, you are a very special person to me. You can private-message me anytime if you need help with something.

Thank you.


I have had people here help me with life skills. One person helped me a lot. she helped me do something I had been trying to do for years. She made me a list of steps. That made it possible for me, I just went down the list following them in order. Not confusing that way. She was very kind.

I felt bad asking for so much help so often. I am using ChatGPT now. It is not always correct but it has endless patience and I do not have to feel bad asking it to explain over and over. I think it can be great for autistic people.

 

[Mary Terry]

Thank you.


I have had people here help me with life skills. One person helped me a lot. she helped me do something I had been trying to do for years. She made me a list of steps. That made it possible for me, I just went down the list following them in order. Not confusing that way. She was very kind.

I felt bad asking for so much help so often. I am using ChatGPT now. It is not always correct but it has endless patience and I do not have to feel bad asking it to explain over and over. I think it can be great for autistic people.

Please never feel bad about asking for help. That's what this forum is all about and it's a wonderful place. I wish there was something like the Academy Awards for websites. I'd nominate it.

 

[grommet]

Please never feel bad about asking for help. That's what this forum is all about and it's a wonderful place. I wish there was something like the Academy Awards for websites. I'd nominate it.

Thank you. It is reasonable for someone to lose patience when a person keeps asking the same question. Maybe it feels like you are not making progress. Someone here did lose patience with me. I do not blame them. I was asking about something they had explained many times but I asked again. Nice person who helped me a lot but we are only people helping each other, not social workers.

I got pretty upset when that happened, I felt real bad. My life growing up people always got frustrated with me until I stopped saying anything.

When I first started meeting autistic people in person in meetings, it was very nice, wonderful. Everyone accepted everyone else. No one ever made fun of me and no one ever made fun of anyone there for how they were. If someone said they did not know how to do something, people believed them and accepted it. It was sad sometimes because we were adults but you could see how much pain they were in and embarrassed sometimes because they did not know how to do laundry or things like that. Because everyone accepted me I promised myself I would do that too, whatever anyone told me I would believe them and if they said they did not know something and needed help I would just do it.

Most of the other people there were so afraid and it looked like they felt ashamed, thinking everyone else could do things really well but they could not. I miss everyone at the meetings but it is too hard to go anymore.

There is an independent living center in my city. I called them once and asked if they could help me understand the date for something. They were very bad about it. They spent a long time telling me that is not what they do. It would have taken them a few seconds to just help me and answer my question.

My ex-girlfriend and I were the same in that if the other person (she was autistic too) said they did not know something or could not do something, we would just say, “Okay.” We never got that from other people, our whole lives. In the meetings people would say okay, they believed you.

It is not about intelligence. Very bright people but could not write checks or understand contracts or do food shopping. People memorized exact routes so it looked like they understood the buses very well but it was a trick. They did exactly the same things every time to make the trip, following step-by-step the next thing in the order. They could not go somewhere else.

I wrote too much, long posts are very hard to read.

ChatGPT has been easier for me. It is not human so it does not feel nice when it helps but it also never acts angry when I ask over and over or keep saying I do not understand.

The only thing I would say is that if you meet an autistic person and they say they do not know something or cannot do something, please just say, “Okay.” Do not judge them or try to see if they are making it up because you see them doing other things so well, like have a high paying job in tech. I had a roommate who had un-cashed paychecks on the floor under laundry. He would barely eat. One day he was sleeping in his room with the window open and it was 29ºF. He was a genius who graduate M.I.T. on a full scholarship and perfect SAT scores. One of only 50 people that year who had done that. But he could not clean his bathroom or groom well, manage money, mail or receive packages. For a while he worked at NASA on the Space Shuttle and at Lockheed Martin on missile re-entry trajectories.

I think the kindest most wonderful thing you can do for autistic people is believe them, accept them without judgement. I am really good at some things, if I could help someone with what I know they could help me too, we could help each other so much. I think that happens here, like you said.

Even though I tried to stop writing so much I kept writing, maybe because there is so much inside.

 

[WhitewaterWoman]

Grommet, you have a clear, lucid style of explaining things. I value that.

(FYI, many organizations are unable to provide help, even though they are supposed to, because the people working in them are impatient, unskilled, underpaid and uninformed.)

 

[Mary Terry]

Grommet - You have explained so well the difficulties of many people on the spectrum. And, coincidentally, the difficulties of people like my profoundly deaf sister. I will help you anyway I can. Please don't ever hesitate to PM me about anything.

After my brother died, I began working with my 19-year-old autistic nephew to teach him some life skills. (His mother is autistic and has always infantilized him). I taught him how to get a glass of water, how to make a sandwich, how to tie his shoes, how to use my laptop and many other things. I tried to help him get his GED and had to teach myself algebra to do it, but he couldn't pass because he cannot speak or write voluntarily so he couldn't write an essay that was mandatory to pass the test. He aced everything except the essay part.

That experience led me to become a voluntary tutor for other young people on the spectrum who were trying to get a GED. I know I helped some of them and realize that some will never be able to achieve that. It used to break my heart to see how neglected some were. They needed so much help, and some appeared malnourished, so I always brought food for everyone for lunch.

That was life-changing for me.

 

[grommet]

Grommet - You have explained so well the difficulties of many people on the spectrum. And, coincidentally, the difficulties of people like my profoundly deaf sister. I will help you anyway I can. Please don't ever hesitate to PM me about anything.

After my brother died, I began working with my 19-year-old autistic nephew to teach him some life skills. (His mother is autistic and has always infantilized him). I taught him how to get a glass of water, how to make a sandwich, how to tie his shoes, how to use my laptop and many other things. I tried to help him get his GED and had to teach myself algebra to do it, but he couldn't pass because he cannot speak or write voluntarily so he couldn't write an essay that was mandatory to pass the test. He aced everything except the essay part.

That experience led me to become a voluntary tutor for other young people on the spectrum who were trying to get a GED. I know I helped some of them and realize that some will never be able to achieve that. It used to break my heart to see how neglected some were. They needed so much help, and some appeared malnourished, so I always brought food for everyone for lunch.

That was life-changing for me.ut

An article was once link here about an autistic man in England who starved to death. He had food. A few months ago I showed an article about a man who died with more than $300,000 in his bank account but lived in messy poverty.

Please excuse the strong way I am going to put this but I hate “tough love”. It is awful. The worst thing I have been through. The idea being if you are cruel to someone, insult them, mock them for having trouble and leave them alone to solve it, out of necessity they will solve it for themselves. No. Autistic people just suffer, get very sick, lose teeth, are evicted, are conned out of their money, tricked into committing crimes, and sometimes die.

I wonder if the idea is we are being lazy and just asking someone else to do something for us so we do not have to do the work. Maybe that is what non-autistic people who do this are thinking. But we are telling the truth so it is like leaving a person alone in a forest miles from help, most will not make it out.

It also teaches us to stop talking about ourselves, to stop asking for help. We won’t be believed anyway or we will be made fun of. “What do you mean? How could you not know that?” Why would I say it, if it were not true? But they do not believe me, so I stopped saying anything. But with other autistic people they believe you. I have said before, the nicest thing a person can say to you is, “Okay.” You tell them about yourself and they say that. They do not interrogate you trying to make you admit the real truth, that you are lazy and do know or lying for attention because it is not possible you cannot do the thing you say you cannot.

I did not know how to take care of my teeth until I was in my early thirties, a dentist told me what to do. I am autistic so do exactly what I am told and I stopped getting cavities and having other problems. I mention this because I once had to go to a dental school to have five fillings replaced and other procedures. I was more afraid of the bus ride to the clinic. I was frozen, it had been years since I was trying to take a bus. It made no sense to me. Imagine a cork board with index cards explaining everything you need to know about something. Then imagine all those cards stacked on top of each other pinned to the board. You cannot separate them. All the information is there but all at once, the only way you can see it is everything at the exact same time. It is unreadable. The ride over I was in shock, hardly in my body.

But how could someone not know how to ride a bus? I did not. Other people cannot do laundry. They could if you explained it to them and gave them steps, suddenly they could. Telling them to “just do it” will mean they never will be they cannot figure it out and will be ashamed and wear dirty clothes then buy new ones. They are not making it up.

If autistic people could get the help we need, we could have jobs and even families. We could be parents. We could travel. We could have full lives. More smiling.

Being at the airport and having the airline employee tell you your seating assignment means nothing. It was words. I only know I have to be inside the plane. If I tell them I do not understand, they will do what everyone has always done and never made sense to me, never. They will repeat exactly what they said the first time. This makes no sense. So I give up or panic and go on the plane pretending, sweating, almost crying, terrified and miserable. Using the flow of passengers to show me where to go. It does not have to be that way.

“This is your seat assignment.”

“I do not understand.”

“Would you like someone to show you? I can have someone on the plane show you your seat.”

”Yes please.”

Fast, easy for everyone, problem solved. But people do not believe so we hide what we do not know, look scared and try to fake it until we are so stressed and unhappy we start living small lives that make us alone. It does not have to be this way. A little help. People getting government support like this, it must be amazing. Just a little help could solve so many of my problems. It took me years to figure out how to mail a package at the post office. I can discuss economic theory, interstitial boundaries in steel making, matter phase changes, pluralistic ignorance, geopolitical theory and why standing still means some animals can not see you.

I have Einstein’s birthday memorized. I know what sipes on tires are for. I know why being close to underwater reefs the water will be coldest because of thermoclines, that slow-thinking is why the bus driver does not remember opening the door to let me on but fast-thinking is how he will answer my questions. But the post office was a total blank space for me. How could I not know how to mail a package? Well, I didn’t. Just believe me.

That the Danish government is helping autistic people the way they need, means so much. I am very glad.

 

[kriss72]

That the Danish government is helping autistic people the way they need, means so much. I am very glad.

I really get what you say in your post, and yes, it is help with things that must seem so basic to others, I know how frustrating I feel people get to me, when I ask for help for things I honestly don't know how to do - at least not without thinking a lot about them, analyzing, asking questions - when I was young I blamed my self for being so insecure, people told me to just be stronger, and asked, why can't you do these things if every one else can? My spouse have asked me many times, why can't you just do this or that - but it is not so simple for me... it's not just doing something if the task has any complexity, not without getting overwhelmed by it. When I was assessed it was the first time I told someone about my challenges, and the response was understanding, and not, "just try harder", in the end I told my assessor that I really appreciated not being told to just try harder, and her answer was - Kriss, I think, if it was just a question of you trying harder, you would have done that already.

The examples, like with the bus or the airplane and at the same time being able to discuss highly specialized topics, are highly relatable even it is different things I have struggled with or know about - my temp support is really making the steps I have to do super clear - like "take box with recyclables, and put in your car" - "drive car to thrift store" - "bring box inside" - "give box to staff, tell them you need to get the box back" - "Opening hours are from x to y every day" - that was doable for me, each step was small enough for me to understand and do without feeling stressed (except I needed to talk to someone I didn't know, but at least I knew what to say to them), and more importantly, I have that list for next time I need to bring something there I'm really getting help I never knew I needed, and it is not about me trying to avoid doing a task, I'm doing all of it myself, I just need to be told exactly how to do it. I think it is a good investment from the country to offer support like that, both on an economic level and on the humane level.

 

[grommet]

When I was assessed it was the first time I told someone about my challenges, and the response was understanding, and not, "just try harder", in the end I told my assessor that I really appreciated not being told to just try harder, and her answer was - Kriss, I think, if it was just a question of you trying harder, you would have done that already.

I think this is perfect, exactly. Telling us to try harder is cruel and impossible, even if they mean it kindly. We try so hard we make ourselves sick. I have stress nightmares where I am in some situation, people are watching and expecting me to do something and I do not know what to do. They get angry thinking I am playing a game to annoy them. I panic, feel how many times this has happened before and I wake up. Always the same, me trying so hard it physically hurts, I don’t understand the situation and people always angry, always the same disgust and disappointment on their faces (I mean their expression). I feel like if I tried harder I would explode.

The examples, like with the bus or the airplane and at the same time being able to discuss highly specialized topics, are highly relatable even it is different things I have struggled with or know about - my temp support is really making the steps I have to do super clear - like "take box with recyclables, and put in your car" - "drive car to thrift store" - "bring box inside" - "give box to staff, tell them you need to get the box back" - "Opening hours are from x to y every day" - that was doable for me, each step was small enough for me to understand and do without feeling stressed (except I needed to talk to someone I didn't know, but at least I knew what to say to them), and more importantly, I have that list for next time I need to bring something

This is perfect, so happy reading this. This is what someone did for me. A clear sequential list. Obvious for other people but I could not do it without the list. I had to go to a government agency for a municipal transit pass. It took me five years to do it. I had it on my calendar every month, I set reminders, but I panicked and never went because I did not know what to do. This happened for five years, every year I felt ashamed, I felt so bad and I was not able to ride the transit. Then someone on Aspie Central helped me. They made me a numbered list with very clear steps. I still have it. I went to the agency and finally after all those years did it. It was an amazing feeling. If we get help we can do things. I did not wait five years because I was not trying hard enough. I writhed month after month for years failing every month because I could not do it.

there I'm really getting help I never knew I needed, and it is not about me trying to avoid doing a task, I'm doing all of it myself, I just need to be told exactly how to do it. I think it is a good investment from the country to offer support like that, both on an economic level and on the humane level.

Humane (The forum will not let me use a heart or I would have).