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Daily struggles and support

Hi Joel,

funny to read from someone from Luxemburg. I grew up there and frequently visit. What a coincidence!

I'm 25 and quite independent. I just finished medical school, but after dragging on for the last few years, I was completely burnt out at the end of it. Right now, it feels somehow impossible to plan things ahead. Change already usually makes me very anxious, but right now, I just can't deal with it at all. But I hope that it'll get better after a break.
There are certain aspects in life where I need assistance from my partner. For example, I can't handle keeping a place reasonably clean and tidy, or remember household chores. People keep calling me lazy, which stings, but I honestly can't, as much as I want to. I get paralyzed, don't know where to start, get caught up in small things or simply forget, even with a plan. When I still lived on my own, I'd break down crying every few months because the chaos around me suffocated me, and my partner would help me clean up everything by telling me exactly what I should do while he would do another thing.
When I am just too overstimulated or oversocialized by my surroundings, he also provides mental support. Since he's on the spectrum too, we both look out for each other.
I don't have a regular therapist anymore. I used to, but for something different (although I did also adress my problem with social meltdowns, and while the therapist surely tried her best at the time to give me advice, since autism wasn't on her radar, it didn't really help). Now, I know the psychologist, who mini-assessed me (like a pre-view before doing an entire assessment) and whom I liked and know I could go back to if I needed it.
I don't really have much support from my family, since I didn't tell them about my diagnosis and don't know if I ever will. They're not extremely open to that. So that one's on me.
I noticed that when I was just studying and spent a lot of time home alone with my books, I could easily handle the workload. I started to decompensate when work involved being somewhere else and working with other people all the time. At the end of uni, we have this practical year where we have a 4-day-work-week, 8 hours a day (the doctors work 5-day-weeks and basically do up to several hours of overtime per day). I felt that the 4-day-week was the utter maximum I could handle. Even with that, I had to take sick days sometimes because I was so overstimulated I'd start crying at the thought of going the next day (I honestly liked the work and the team, it was really just overstimulation). I'd just be completely worn out at the end of the day, not even being able to talk to my partner, let alone do something else. I'd love being able to start working in a 4-day-week from the beginning, since I feel like I just couldn't handle 5 days. Maybe even 3 days if I can't handle 4 days, but that's very rare and hard to discuss with your employer, since they expect work beginners without kids to be able to put it all in, do 5 days, overtime and on-call shifts. I'm honestly scared that I'll crash even under a 4-day week. I'd wish for a lot more flexibility from the workplace.
Hey Aurora, thanks for sharing! Where were you based here in Lux? :)
Like I said before, it's super important to have a partner you can relate on. And so it is here, glad to hear that! I can relate a bit to this chaos things and not able to do anything, it's not quite the same for me but I get the feeling.
Will you take the risk and tell it your family? I would do it, but I don't know your circumstances..
When it comes to work, I can totally understand this. I work for the government and have to deal with a lot of people, that's why I made the request to only work 4 days a week, still pending. It's overhelming on some days..
What are your plan for the future? Would you say that that an online solution could help you?

Regards,

Joel
 
It is pretty much described by @AuroraBorealis . Overstimulation. I become this way at any job involving a lot of people. The best job is no people, but we learn to mask because that's the only way l can pay my living expenses, and my jobs usually involve alot of people. My bosses tend to put me in charge, because l am very diplomatic and aware of liability issues that my employer may face due to incorrect choices. My support system is to slow the heck down, and do things slowly. Like right now l have about 30 idiotic repair jobs on my home that l diligently need to fix so that l may place this home for sale. (Due to vandalism).
Hey Aspychata! Yes, the mask-thing is pretty much the only thing we can do when being in public or work, but it's making me super tired and I guess it's the same for a lot of us. Your self-support sounds great, if it works! Why do you have so many problems with vandalism (out of curiosity)? I can imagine that it's super stressful..
 
For the urgent problem, it depends on what the problem is and how urgent - when I think of problems that can be urgent, i think it is usually an question of finding the right professional to call, I can do that myself if it is truly urgent, (even I might need some time after to become myself again).

For the more normal stuff I have a social worker I meet regularly, she helps me with daily planning and identifying tasks, like... the result is a piece of paper with a plan for each day of the week, with what I should do in the morning and in the afternoon, we can do a couple of weeks at a time, she also helps me by breaking down complex tasks so each step becomes small enough for me to do, again on paper, and she helps me contacting other government institutions for support when needed, she can also follow me to meetings, I'm not good at explaining or knowing my self without preparation, so she can support me in meetings and help me follow up on action points.

I'm very thankful that I have that social worker to help me, my life used to be a mess and pure survival mode, while raising a kid that had her own set of chalenges. When she was younger I had a psychologist I could call and met with regulary to help me understand and teach me to raise her, he could also follow me to meetings in the school, our family also had a different social worker to monitor... sorry, I mean... to help us. Now my daugther is a legal adult and has her own support system that I'm not involved in, I have basically been reduced to a driver, food & money provider for her :) but that is how it should be, I'm proud of her :)

At my job, my manager knows about my diagnosis and supports me by giving me tasks that fits me (each one should be small and well defined). I meet virtually with him twice a week, to sync on progress and getting new tasks assigned (I work 100% remote, which is ideal for me, and we currently try with me working 4h a day).
Hey Kriss, thanks for telling me all this.
Do you have enough support, in urgency cases? In what country do you live (you don't need to share, if you don't want!)
Social worker sounds great, honestly! If someone needs this and they can provide it - great solution for daily stuff! I like that she can support you even in meetings etc.
Yes, if you're only the driver and ressource provider now - you did everything right and I'm sure she will see this exactly like this. Great to hear!
Your manager sounds like a super nice guy, rare thing when it comes to ASD or other disabilities (I can't complain, though). Working remote would be super nice for me, too.
 
@JoSchi That must be a typo, because l never typed vandalism. Maybe my mobile phone has hiccups. My issue is l have many little repairs to do and because l can be a bit of a perfectionist when getting a home ready to sell, my brain is running a constant to do list like a 24/7 stock banner updating stocks prices.
 
Hey Kriss, thanks for telling me all this.
Do you have enough support, in urgency cases? In what country do you live (you don't need to share, if you don't want!)
Social worker sounds great, honestly! If someone needs this and they can provide it - great solution for daily stuff! I like that she can support you even in meetings etc.
Yes, if you're only the driver and ressource provider now - you did everything right and I'm sure she will see this exactly like this. Great to hear!
Your manager sounds like a super nice guy, rare thing when it comes to ASD or other disabilities (I can't complain, though). Working remote would be super nice for me, too.
It is a really good question if I have enough support in urgent cases, can you provide examples of what you think about when you say urgency cases?

I live in Denmark :)
 
It is a really good question if I have enough support in urgent cases, can you provide examples of what you think about when you say urgency cases?

I live in Denmark :)
Like me, sometimes at work f.ex. someone will say sth and I can't stop thinking about how he meant it and it will eat up my brain. I could ask but still wouldn't be sure about it, so I need someone else to help me thinking rational. Or some situations that will not let me rest and this is sth where I need "urgent" help, because otherwise it will stress me for a long time.
 
Hey Aurora, thanks for sharing! Where were you based here in Lux? :)
Like I said before, it's super important to have a partner you can relate on. And so it is here, glad to hear that! I can relate a bit to this chaos things and not able to do anything, it's not quite the same for me but I get the feeling.
Will you take the risk and tell it your family? I would do it, but I don't know your circumstances..
When it comes to work, I can totally understand this. I work for the government and have to deal with a lot of people, that's why I made the request to only work 4 days a week, still pending. It's overhelming on some days..
What are your plan for the future? Would you say that that an online solution could help you?

Regards,

Joel
I'd rather not say where exactly I'm from, after all it is quite a small country and I want to stay anonymous. Feel free to PM me if you're interested further.
Honestly, I don't know if I'll ever tell them. They have a very stereotypical view of autistic people basically just being rude, socially inadept people who need help for everything. Besides this being insulting, I'd be scared that they wouldn't believe me. I have tried telling them many times in the past about things I struggle with or about being tired and they mostly reacted by telling me that I have no reason to be tired, sincd (at the time) "all I do is study, wait till you start working". Not the best foundation. And I have enough problems with self-care as it is. Maybe one day, when I'm more sure of myself and can care less about their reaction.
By online-solution, do you mean remote work? That most probably won't be an option, since I'm going to be a doctor. There are no jobs you can do from home there. I guess I will try to start with 4 days and see how it goes.
 
Like me, sometimes at work f.ex. someone will say sth and I can't stop thinking about how he meant it and it will eat up my brain. I could ask but still wouldn't be sure about it, so I need someone else to help me thinking rational. Or some situations that will not let me rest and this is sth where I need "urgent" help, because otherwise it will stress me for a long time.
I see, I was thinking like medical emergencies, or the house falling apart.

I relate to your examples, I have it in the same way - I need alone time to process cases like that, and that takes time - it can prevent me from doing much more than sit on my sofa with nc-headphones listening to music playing with a fidget toy. So no, I don't have any explicit support for those cases, except my surroundings accepting/respecting that I need alone time, and sometimes its for reasons I can't communicate, at least in the moment.
 
Hello there!


To further the effort I created this Google form. If you want you can share 10-15min of your time and help us by answering some of those questions. It doesn't cost anything (but time) and might help to later solve or reduce some problems. I'm super thankful for all answers!


https://forms.gle/xxCUNfepa9aMH1rr6


It's a link to google forms, no virus or ads and it's anonymous - I promise.

Kind regards,

Joël
 
Hello there!


To further the effort I created this Google form. If you want you can share 10-15min of your time and help us by answering some of those questions. It doesn't cost anything (but time) and might help to later solve or reduce some problems. I'm super thankful for all answers!


https://forms.gle/xxCUNfepa9aMH1rr6


It's a link to google forms, no virus or ads and it's anonymous - I promise.

Kind regards,

Joël
Hi Joel, does a partner count as "external support"? Or just governmental aids and stuff?
 

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