Daily struggles and support

[JoSchi]

Hey there, this is for research purposes. My name is Joel, I'm 33 years old and based in Luxembourg. I got my Asperger diagnosis 3 years ago and as I miss certain things here, when it comes to support and my own struggles, I want to build something. So here are some questions that you could answer, if you want it!

What is your approach to everyday self-support? What does it look like? If you have an urgent problem and need help, what do you do? Do you have any person or community who is always there to help? Or maybe you use some online solutions that help you? Share your experience, please.

Kind regards,

Joel

 

[Neonatal RRT]

Research purposes. Would it be important to categorize the responses to these questions "ASD-1, ASD-2, and ASD-3"?

 

[JoSchi]

Research purposes. Would it be important to categorize the responses to these questions "ASD-1, ASD-2, and ASD-3"?

Hello Neonatal,

If people want, they can put their diagnosis in their comment. But it's not mandatory if they don't want!

 

[Misty Avich]

Hi, Joel!

What is your approach to everyday self-support?

I don't really have everyday support. My husband helps me with my disorganisation and EF issues, but I'll probably manage anyway, it's all just easier when your life partner is there to help as a partnership.

If you have an urgent problem and need help, what do you do?

I usually tell my husband or close family members.

Or maybe you use some online solutions that help you? Share your experience, please.

Online forums mostly, especially when I wish to be anonymous. I try Samaritans but they don't really offer support I need. The support I need for my anxiety is reassurance and answers. Samaritans are better for depression, which I sometimes get.
Anxiety is more rational and is usually because I don't understand something and need reassurance from a knowledgeable person.

 

[JoSchi]

Hi, Joel!

I don't really have everyday support. My husband helps me with my disorganisation and EF issues, but I'll probably manage anyway, it's all just easier when your life partner is there to help as a partnership.

I usually tell my husband or close family members.

Online forums mostly, especially when I wish to be anonymous. I try Samaritans but they don't really offer support I need. The support I need for my anxiety is reassurance and answers. Samaritans are better for depression, which I sometimes get.
Anxiety is more rational and is usually because I don't understand something and need reassurance from a knowledgeable person.

Hello Misty!

This is absolutely true and the best case that can happen. When your partner and family members understand what you‘re going through and help you. I have this too, but in the same way it kind of hurts me a lot if people are ignorant and do not understand what it means to be in the spectrum.

May I ask in what country you live and what support you could have if you‘d want it?
I know Samaritans and they are doing a wonderful job, but as you say, more when it comes to depression and not having a solution anymore. But I‘m glad these guys exists.

Regards,

Joel

 

[Misty Avich]

I often worry about things like becoming homeless in the future. In fact if I think too deeply about it I panic. What I need is reassurance and reliable advice or resources on how to not become homeless.
The Samaritans can't seem to offer that kind of support.
What I don't need is ableists telling me that it's not that bad being homeless and then start giving me advice on how to cope with being homeless should it ever happen. That doesn't work at all on me, it just heightens my anxiety. I am a very homely sort of person, and I thrive on the security home brings me. Plus I'm agoraphobic. If I was to ever be homeless, I wouldn't survive. I'd just die of fright I think.

 

[Aspychata]

My feeling is that l have great days, and then l have backward days. Anxiety has inserted itself, and l tumble down the rabbit hole. Now just working on pulling myself out. Support is slowing down, taking complete breaths, etc.

 

[Neonatal RRT]

I am ASD-1/Asperger's

I am not receiving any support in the form of assistance programs.
I am married, own a home, been at the same job for 38 years, raised two children, no financial concerns.

How I cope with daily life and struggles: I grew up in a generation where I was raised as a neurotypical child with parents who practiced "skillful neglect" in combination with a high emphasis upon personal independence and teaching life skills at a very young age. There were no "two-person jobs", just do it yourself. I was doing things at the age of 5 that most adults now-a-days don't have the skills to do. What I now understand to be "autistic behaviors", my parents punished me physically for it because to them, I was "acting out" and had "behavior issues" that needed to be squelched. The alexithymia probably prevented me from internalizing any of this as "trauma". In fact, I have no feelings about it at all. I had no sense that I was somehow "different" until I was in my teenage years, but autism was not on anyone's radar. I was also brought up with very Stoic virtues that have served me well throughout my lifetime. I do things out of duty, responsibility, accountability, and honor, and feelings don't enter into my decisions. I tend to be very cold, unemotional, and logical, think Spock from Star Trek. I am also alexithymic, which is a double-edged sword, but is actually an asset when it comes to decision making. I am also highly competitive in all aspects of my life with an "adapt and overcome" attitude. I have a very high tolerance for mental and physical discomfort and actually enjoy the challenge and personal satisfaction of putting myself through mental and physical challenges. I enjoy risk-taking and making mistakes, as sometimes there is great rewards for taking risks, and there is also wisdom from making mistakes.

 

[lovely_darlingprettybaby]

Hey there, this is for research purposes. My name is Joel, I'm 33 years old and based in Luxembourg. I got my Asperger diagnosis 3 years ago and as I miss certain things here, when it comes to support and my own struggles, I want to build something. So here are some questions that you could answer, if you want it!

What is your approach to everyday self-support? What does it look like? If you have an urgent problem and need help, what do you do? Do you have any person or community who is always there to help? Or maybe you use some online solutions that help you? Share your experience, please.

Kind regards,

Joel

I try my best to do everything but I am unwell and get exhausted and often need help.
I have some support workers and they are a great help.
But it still get overwhelming when I am sick and I need to rest my arms and legs
But also my hyperactivity does not want to rest
But my body and soul need it.

I hate this being denied just because you have restlessness and hyperactivity does not mean you do not need to lay in bed and rest a lot.
I try my best, I am very organised.
I try to it all but the tasks get overwhelming and sometimes I want to scream and just throw everything everywhere because it is too much for a sick person.
And I should not run out of clothes because they were not washed or cook all my own meals
Or have to deal with more when I am very unwell.
I cannot stand how anyone could say what I am is normal and it is just me.
I can do things and am capable.
I hate being told I am not. I have done it the daily grind to some capacity my whole life which includes cooking, clothes washing, some dishes at times and cleaning including mopping floors, wiping surfaces, sweeping, cleaning bathrooms. I have cooked each one of my meals practically since I was 23, breakfast, lunch and dinner and made snacks. And done all my grocery shopping. And other shopping.
How can anyone say I am a superhuman who copes easy and I have not needed a lot of geniune help and support at times so much it grieved my soul.
And have not wished I had even someone to carry my water.
Or that I had not been scared or thought I could not make it or do another day.
Or that I had not cried my heart out days on end.
Or given up
Or that I had not really hurt myself along the way by tripping over the vacuum cleaner and I thought practically breaking my toe because it was some for months or falling completely over in the doorway or hitting my head on the dryer or dropping a shampoo bottle on my toe that I think I hurt months ago.
Had not forgotten towels in the shower and wanted someone to bring them or needed something at the supermarket like milk I could not get and had to make do or left the washing machine on when I tried to shower or had the wrong shampoo etc and got shampoo in my eyes that hurt, had to run away many, many times naked or try to make appointments with no clothes.
Had not been so exhausted could not eat much and needed someone to cook me a meal.
Had really bad stuff happen to me like hair loss and was so anxious and depressed and worried and would watch it fall out everywhere including my hands when I was laying in bed and asleep, worried quite obsessively about things like covid, wondered why I got no sympathy and love and desperately needed it.
And was sick as a dog with nausea and tried to do appointments when I felt like I would want to throw up out of nowhere or had to sip water or had not had enough time to eat properly and was nauseated or was tired as a dog just trying to.hold my head upright and pretend I did not look like I would die in front of others or stop myself from saying I just feel so sick today like people would be like how are you?
And it would be hard not to say to one of my workers i feel so sick or anyone on my worse days.
Had to keep it inside because they could not understand.
Felt like cancelling appointments midday through because of fatigue.
Anyway I am unwell but anyway

 

[Jumpinbare]

I am ASD-1/Asperger's

I am not receiving any support in the form of assistance programs.
I am married, own a home, been at the same job for 38 years, raised two children, no financial concerns.

How I cope with daily life and struggles: I grew up in a generation where I was raised as a neurotypical child with parents who practiced a combination of "skillful neglect" in combination with a high emphasis upon personal independence and teaching life skills at a very young age. I was doing things at the age of 5 that most adults now-a-days don't have the skills to do. What I now understand to be "autistic behaviors", my parents punished me physically for it because to them, I was "acting out" and had "behavior issues" that needed to be squelched. The alexithymia probably prevented me from internalizing any of this as "trauma". In fact, I have no feelings about it at all. I had no sense that I was somehow "different" until I was in my teenage years, but autism was not on anyone's radar. I was also brought up with very Stoic virtues that have served me well throughout my lifetime. I do things out of duty, responsibility, accountability, and honor, and feelings don't enter into my decisions. I tend to be very cold, unemotional, and logical, think Spock from Star Trek. I am also alexithymic, which is a double-edged sword, but is actually an asset when it comes to decision making. I am also highly competitive in all aspects of my life with an "adapt and overcome" attitude. I have a very high tolerance for mental and physical discomfort and actually enjoy the challenge and personal satisfaction of putting myself through mental and physical challenges. I enjoy risk-taking and making mistakes, as sometimes there is great rewards for taking risks, and there is also wisdom from making mistakes.

My story is so similar I won't duplicate the above. However, I don't particularly put myself through challenges. I have an adequate supply thrown at me in daily life. I just go into "forced march" mode and push through them. I don't generally enjoy them. Also not much of a risk taker. I will take calculated low risks when I see a tangible benefit.

I did notice my differences in preteen years.
Mr Spock was definitely my idol.

I am ASD1/Asperger's. I have only family and a few friends for support. I retired from my last job after 32 years. Now I only have to interact with people to buy gas and groceries (hurray for Amazon!).

If I want to interact, I have a few friends I can call/text.

 

[JoSchi]

I often worry about things like becoming homeless in the future. In fact if I think too deeply about it I panic. What I need is reassurance and reliable advice or resources on how to not become homeless.
The Samaritans can't seem to offer that kind of support.
What I don't need is ableists telling me that it's not that bad being homeless and then start giving me advice on how to cope with being homeless should it ever happen. That doesn't work at all on me, it just heightens my anxiety. I am a very homely sort of person, and I thrive on the security home brings me. Plus I'm agoraphobic. If I was to ever be homeless, I wouldn't survive. I'd just die of fright I think.

I can relate to this, financial things give me something similar. Of course these kind of advices don't work for you, it's kind of stupid from some people to think this could help. I'm glad you got this support from your loved ones, it's super important and often a problem. Don't you have a good therapist in your surroundings? Or don't you trust foreign people? Not meant in a bad way, I just don't know how to say it in english. I for example, have one person I trust when it comes to therapist and it would be super hard for me to switch, honestly.

 

[JoSchi]

My feeling is that l have great days, and then l have backward days. Anxiety has inserted itself, and l tumble down the rabbit hole. Now just working on pulling myself out. Support is slowing down, taking complete breaths, etc.

What about your relatives? Pulling yourself out, in my experience, works until a certain point. After this point I'm super exhausted and things go really bad. What do you mean with support is slowing down? Because of your own choice or because there's nothing or no one that can help you?

 

[JoSchi]

I am ASD-1/Asperger's

I am not receiving any support in the form of assistance programs.
I am married, own a home, been at the same job for 38 years, raised two children, no financial concerns.

How I cope with daily life and struggles: I grew up in a generation where I was raised as a neurotypical child with parents who practiced "skillful neglect" in combination with a high emphasis upon personal independence and teaching life skills at a very young age. There were no "two-person jobs", just do it yourself. I was doing things at the age of 5 that most adults now-a-days don't have the skills to do. What I now understand to be "autistic behaviors", my parents punished me physically for it because to them, I was "acting out" and had "behavior issues" that needed to be squelched. The alexithymia probably prevented me from internalizing any of this as "trauma". In fact, I have no feelings about it at all. I had no sense that I was somehow "different" until I was in my teenage years, but autism was not on anyone's radar. I was also brought up with very Stoic virtues that have served me well throughout my lifetime. I do things out of duty, responsibility, accountability, and honor, and feelings don't enter into my decisions. I tend to be very cold, unemotional, and logical, think Spock from Star Trek. I am also alexithymic, which is a double-edged sword, but is actually an asset when it comes to decision making. I am also highly competitive in all aspects of my life with an "adapt and overcome" attitude. I have a very high tolerance for mental and physical discomfort and actually enjoy the challenge and personal satisfaction of putting myself through mental and physical challenges. I enjoy risk-taking and making mistakes, as sometimes there is great rewards for taking risks, and there is also wisdom from making mistakes.

Thanks for your post and telling some parts of your story. I'm really sorry for your experience, I'll never get how parents can to things like those. But normally we learn from this and can try to be better parents for our childs. I'm sure you or people like you would not do the same mistakes and your kids benefit from this.
My parents gave me away when I was 8. Not completely, as I could visit them over the weekend, or at least some of them. But they wanted to help me. In the 90's, Asperger wasn't super present, so my diagnosis was ADHD. They tried to "heal" this in different homes for "special" children. As you can imagine, it didn't work and things only went better when I got 18 and was allowed to live alone. From this moment on, I sorted my life out. I'm not mad at my parents, because I know they payed a lot of money for all this and they just wanted to help me, but listened to the wrong therapist. But I lost this parents-kid connection and it's not coming back. I still see them, but to make them happy. It doesn't mean a lot to me, as harsh as it sounds.

Yes it can be an advantage, but isn't it hard for your relatives? I don't have this, but when I get angry or someone hurts mme, my brain just protects myself and I will get super cold, which hurts the people around me. It's sth I'm working on. I like that you're ready to take risks and learn from mistakes. Took me some time, but doing the same now. It helps me a lot getting those experiences.

 

[JoSchi]

I try my best to do everything but I am unwell and get exhausted and often need help.
I have some support workers and they are a great help.
But it still get overwhelming when I am sick and I need to rest my arms and legs
But also my hyperactivity does not want to rest
But my body and soul need it.

I hate this being denied just because you have restlessness and hyperactivity does not mean you do not need to lay in bed and rest a lot.
I try my best, I am very organised.
I try to it all but the tasks get overwhelming and sometimes I want to scream and just throw everything everywhere because it is too much for a sick person.
And I should not run out of clothes because they were not washed or cook all my own meals
Or have to deal with more when I am very unwell.
I cannot stand how anyone could say what I am is normal and it is just me.
I can do things and am capable.
I hate being told I am not. I have done it the daily grind to some capacity my whole life which includes cooking, clothes washing, some dishes at times and cleaning including mopping floors, wiping surfaces, sweeping, cleaning bathrooms. I have cooked each one of my meals practically since I was 23, breakfast, lunch and dinner and made snacks. And done all my grocery shopping. And other shopping.
How can anyone say I am a superhuman who copes easy and I have not needed a lot of geniune help and support at times so much it grieved my soul.
And have not wished I had even someone to carry my water.
Or that I had not been scared or thought I could not make it or do another day.
Or that I had not cried my heart out days on end.
Or given up
Or that I had not really hurt myself along the way by tripping over the vacuum cleaner and I thought practically breaking my toe because it was some for months or falling completely over in the doorway or hitting my head on the dryer or dropping a shampoo bottle on my toe that I think I hurt months ago.
Had not forgotten towels in the shower and wanted someone to bring them or needed something at the supermarket like milk I could not get and had to make do or left the washing machine on when I tried to shower or had the wrong shampoo etc and got shampoo in my eyes that hurt, had to run away many, many times naked or try to make appointments with no clothes.
Had not been so exhausted could not eat much and needed someone to cook me a meal.
Had really bad stuff happen to me like hair loss and was so anxious and depressed and worried and would watch it fall out everywhere including my hands when I was laying in bed and asleep, worried quite obsessively about things like covid, wondered why I got no sympathy and love and desperately needed it.
And was sick as a dog with nausea and tried to do appointments when I felt like I would want to throw up out of nowhere or had to sip water or had not had enough time to eat properly and was nauseated or was tired as a dog just trying to.hold my head upright and pretend I did not look like I would die in front of others or stop myself from saying I just feel so sick today like people would be like how are you?
And it would be hard not to say to one of my workers i feel so sick or anyone on my worse days.
Had to keep it inside because they could not understand.
Felt like cancelling appointments midday through because of fatigue.
Anyway I am unwell but anyway

Hey! Thank you for telling me all this. It made me so sad to hear how you feel in everyday life, I can only repeat it again - no one should ever have to feel like this. People need to get educated about the different form of mental disabilities, because this is a huge problem in our society. I experience similar things a lot. Or people that think that everyone needs to feel like them, because it's normal to them. Do you want better or more support, but there's nothing in your surroundings, or you can't do it? Do you have ideas what could help you? online, offline? What about your relatives? May you share your diagnosis? It's not mandatory and I don't want you to share sth, when you don't feel good about it. It's for research purposes, and also very interesting for me to hear, because there was a time when I felt like I'm the only one that faces problems (Super dumb, but I was a kid). Try not to let people tell you what you should feel or what isn't a problem.

 

[JoSchi]

My story is so similar I won't duplicate the above. However, I don't particularly put myself through challenges. I have an adequate supply thrown at me in daily life. I just go into "forced march" mode and push through them. I don't generally enjoy them. Also not much of a risk taker. I will take calculated low risks when I see a tangible benefit.

I did notice my differences in preteen years.
Mr Spock was definitely my idol.

I am ASD1/Asperger's. I have only family and a few friends for support. I retired from my last job after 32 years. Now I only have to interact with people to buy gas and groceries (hurray for Amazon!).

If I want to interact, I have a few friends I can call/text.

Thanks for your answer! So you don't like support? Or did I get this wrong? I don't like my usual sessions, but sometimes I crave for urgent support, which I don't get because they don't have enough people working there.

Glad you have Amazon

 

[Neonatal RRT]

Thanks for your post and telling some parts of your story. I'm really sorry for your experience, I'll never get how parents can to things like those. But normally we learn from this and can try to be better parents for our childs. I'm sure you or people like you would not do the same mistakes and your kids benefit from this.
My parents gave me away when I was 8. Not completely, as I could visit them over the weekend, or at least some of them. But they wanted to help me. In the 90's, Asperger wasn't super present, so my diagnosis was ADHD. They tried to "heal" this in different homes for "special" children. As you can imagine, it didn't work and things only went better when I got 18 and was allowed to live alone. From this moment on, I sorted my life out. I'm not mad at my parents, because I know they payed a lot of money for all this and they just wanted to help me, but listened to the wrong therapist. But I lost this parents-kid connection and it's not coming back. I still see them, but to make them happy. It doesn't mean a lot to me, as harsh as it sounds.

Yes it can be an advantage, but isn't it hard for your relatives? I don't have this, but when I get angry or someone hurts mme, my brain just protects myself and I will get super cold, which hurts the people around me. It's sth I'm working on. I like that you're ready to take risks and learn from mistakes. Took me some time, but doing the same now. It helps me a lot getting those experiences.

1. No need to apologize for my experience. In fact, apart from the occasional physical discipline, as an autistic child, this was probably the best experience I could have had. That is, having my parents simply let me explore my world, make mistakes, take unnecessary risks, build things, work, earn my own money, learn all sorts of life skills, etc. In turn, as a parent, myself, I refrained from physical discipline, but I did push my children to learn like I did as much as possible. Also, keep in mind, we must not condemn the cultural values of someone in the 1960's-70's by today's cultural values. As a child of that generation, myself, my siblings, my friends, all knew what was coming if we misbehaved. There was never, ever a thought of "OMG! My parents spanked me! I'm so traumatized!" Keep in mind, this was the way, every kid knew it, every parent knew it, it was expected, accepted, and totally normal, everyday behavior. We never gave it a second thought. We knew exactly what we were going to get. My family moved around a bit, and I went to 6 different schools, in the State of Michigan and State of Washington, and every single school had a wooden paddle hanging near the principal's office, every one. It was perfectly acceptable to paddle naughty children.
2. Alexithymia within the context of a child of my generation. For better or worse, we were constantly being told not to show emotion. Children should be quiet and in control of themselves when in the home and around adults. If you want to be a loud, obnoxious child, do that outdoors,...and we did. Children were to be seen and not heard when in the home. You did whatever your parents told you and no back talking, no showing emotion,...or else. So, you either were conditioned to show no emotion, or like me, you basically couldn't, and this was ideal behavior and a sign of good parenting. NO, it wasn't hard on my relatives, as this was the way, showing emotions was not socially acceptable behavior. I know, in today's culture, this sounds absurd, but back in the day, you were conditioned to keep yourself in check. Frankly, it still is this way amongst the upper management at most institutions and people holding positions of power and authority, as showing emotions is a clear sign of weakness, and that is not acceptable.

Now, what I am sorry for is your experience as a child. I can't imagine being in a situation where your parents would have to give up their child. I can't imagine that nor what you went through.

 

[Jumpinbare]

Thanks for your answer! So you don't like support? Or did I get this wrong? I don't like my usual sessions, but sometimes I crave for urgent support, which I don't get because they don't have enough people working there.

Glad you have Amazon

I don't dislike support. I never had any formal support. I only learned I was autistic about 10 months ago. I am retired now. Formal support is unnecessary. If I have money problems or need help doing something, I have family and friends I can call.

 

[AuroraBorealis]

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.

 

[Aspychata]

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).

 

[kriss72]

What is your approach to everyday self-support? What does it look like? If you have an urgent problem and need help, what do you do? Do you have any person or community who is always there to help? Or maybe you use some online solutions that help you? Share your experience, please.

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).