Very recently diagnosed and feeling a bit lost!

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LostGirI
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14 Jun 2017, 5:51 am

Hello,

I'm new here. I only just got diagnosed last week and came across this site when reading a book about being newly diagnosed and making sense of it all. At first it was a relief to know there is a reason for how I am the way I am and why I struggle so much, but now it's been a few days I feel totally lost and emotional and my head is pretty much spinning. I feel like I need a bit of support and TLC and I just can't seem to find it at the moment. I feel like nobody really understands what I'm going through at the moment.

Yes I may have had it all my life and dealt with it but it has been a problem and no I have not coped, hence me having a bit of a breakdown last year and struggling to hold down my job. Luckily they tell me it is safe and they love me and will do everything they can to help me and so to forget about work for now. However, I feel like it's easy for people to say it will be ok, or just give it time and you'll be fine and all this stuff about how I coped before. Because really I did not cope and that is why I am now very anxious and depressed and can't seem to function these days in and out of work. I don't want to go back to "coping" and doing my own head in. Why does nobody seem to understand that?? Basically I am struggling I think to come to terms with it all and wondering where my life is headed and what I am going to do! I thought I'd try this forum to let off a bit of steam and see if I can get to know a few people like me.

I'm a 35 year old female based in the north west of England. I got a diagnosis of ASD last week, but that's all they have told me for now. I had no idea, it's only because my GP suspected it that he referred me on and I thank him for that. I go back next week to Adult Autism Services to get further info, ask questions and see where we go from here. I am assuming it is high functioning autism/Asperger's from my limited knowledge and things they have said over the last few months.

Anyway, I didn't mean to rant and ramble on. I just need a friendly ear(s) and a bit of support at the moment so if there's anybody out there who can relate please say hello :-)


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shadowtag
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14 Jun 2017, 1:29 pm

Welcome to you; while I wasn't diagnosed as late as you, I remember when I received my diagnosis that it proved to be a mixed bag, as they say.

I'm still wondering what I am to do in life, though I have some short term goals, beyond that however, plans for the future are vague...

If you can, try to take each day as it comes, and plan ahead as things unfold, today is sufficient for it's own trouble, though I know it can be easy to fret in light of so many uncertainties, believe me.

I pray you find the answers you are looking for, and the comfort of an understanding community :mrgreen:


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LostGirI
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14 Jun 2017, 2:35 pm

Thanks for your kind and wise words. You are absolutely right, but taking things one day at a time has never been a strong point of mine :-)


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I'm working with ASD, generalised anxiety disorder and recurrent depression and they frequently kick my ***


SharkSandwich211
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15 Jun 2017, 6:16 am

Welcome to the wrong planet!! ! You are not alone. I haven't worked in over a year and a half. because I wanted to figure out my deficits and create better strategies...but haven't been able to get all of that figured out yet. I was diagnosed last year at 43. I have found that adult oriented services can be a little more difficult to come by; hopefully that is not the case in your area. I am sure the wrong planet will be a good source of information and support as you try to better understand your life through the lens of autism. It is a process. You're in good company here. Again, welcome.
Shark



LostGirI
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15 Jun 2017, 7:53 am

SharkSandwich211 wrote:
Welcome to the wrong planet!! ! You are not alone. I haven't worked in over a year and a half. because I wanted to figure out my deficits and create better strategies...but haven't been able to get all of that figured out yet. I was diagnosed last year at 43. I have found that adult oriented services can be a little more difficult to come by; hopefully that is not the case in your area. I am sure the wrong planet will be a good source of information and support as you try to better understand your life through the lens of autism. It is a process. You're in good company here. Again, welcome.
Shark


Thanks Shark. I felt absolutely terrible last night and like I didn't really have anyone to turn to for support other than a male friend of mine who I have been trying to steer clear of as it's getting a bit complicated. There was no-one else I felt who would listen and offer me some comfort and so I caved. He is visiting me later so hopefully that will help. I have also forced myself out of the house today on a bike ride so that was very good for me. I actually went out on my bike, on my own and on a Thursday! Sounds daft but that is a biggie. It was so hard, I think I was a bit ambitious with the route I picked but hey, I made it. Time to soak in the bath and have something to eat.

Can I ask yo, before your diagnosis were you able to work full time? It's thinking about work stressing me out. It's all well and good my bf telling me he doesn't know why I'm stressed out. My parents will pay my bills and I can build up my hours at work and if I can't do full time then I go back to being self employed. Just like that. He said he's not being mean but he just doesn't know about ASD and he doesn't understand how I feel and what's stressing me. It just makes me feel even more lonely :-(


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Richardf269
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15 Jun 2017, 8:11 pm

LostGirI wrote:
SharkSandwich211 wrote:
Welcome to the wrong planet!! ! You are not alone. I haven't worked in over a year and a half. because I wanted to figure out my deficits and create better strategies...but haven't been able to get all of that figured out yet. I was diagnosed last year at 43. I have found that adult oriented services can be a little more difficult to come by; hopefully that is not the case in your area. I am sure the wrong planet will be a good source of information and support as you try to better understand your life through the lens of autism. It is a process. You're in good company here. Again, welcome.
Shark


Thanks Shark. I felt absolutely terrible last night and like I didn't really have anyone to turn to for support other than a male friend of mine who I have been trying to steer clear of as it's getting a bit complicated. There was no-one else I felt who would listen and offer me some comfort and so I caved. He is visiting me later so hopefully that will help. I have also forced myself out of the house today on a bike ride so that was very good for me. I actually went out on my bike, on my own and on a Thursday! Sounds daft but that is a biggie. It was so hard, I think I was a bit ambitious with the route I picked but hey, I made it. Time to soak in the bath and have something to eat.

Can I ask yo, before your diagnosis were you able to work full time? It's thinking about work stressing me out. It's all well and good my bf telling me he doesn't know why I'm stressed out. My parents will pay my bills and I can build up my hours at work and if I can't do full time then I go back to being self employed. Just like that. He said he's not being mean but he just doesn't know about ASD and he doesn't understand how I feel and what's stressing me. It just makes me feel even more lonely :-(


I know how you feel, as I think most here do. I've also been alone most of my life, and it's not easy to deal with at 34 to realize that I am quite lonely, and depression has taken it's toll on me over the last 30 years. I'll talk if you ever need someone to talk to.



SharkSandwich211
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15 Jun 2017, 10:21 pm

LostGirI wrote:
SharkSandwich211 wrote:
Welcome to the wrong planet!! ! You are not alone. I haven't worked in over a year and a half. because I wanted to figure out my deficits and create better strategies...but haven't been able to get all of that figured out yet. I was diagnosed last year at 43. I have found that adult oriented services can be a little more difficult to come by; hopefully that is not the case in your area. I am sure the wrong planet will be a good source of information and support as you try to better understand your life through the lens of autism. It is a process. You're in good company here. Again, welcome.
Shark


Thanks Shark. I felt absolutely terrible last night and like I didn't really have anyone to turn to for support other than a male friend of mine who I have been trying to steer clear of as it's getting a bit complicated. There was no-one else I felt who would listen and offer me some comfort and so I caved. He is visiting me later so hopefully that will help. I have also forced myself out of the house today on a bike ride so that was very good for me. I actually went out on my bike, on my own and on a Thursday! Sounds daft but that is a biggie. It was so hard, I think I was a bit ambitious with the route I picked but hey, I made it. Time to soak in the bath and have something to eat.

Can I ask yo, before your diagnosis were you able to work full time? It's thinking about work stressing me out. It's all well and good my bf telling me he doesn't know why I'm stressed out. My parents will pay my bills and I can build up my hours at work and if I can't do full time then I go back to being self employed. Just like that. He said he's not being mean but he just doesn't know about ASD and he doesn't understand how I feel and what's stressing me. It just makes me feel even more lonely :-(


Prior to my not working I worked in various areas in the world of culinary arts. mostly as a private chef and a culinary instructor. knowing the problems that I had in that career field I know I don't want to go back to it. I think now I am trying to find something within the Autisim community... either a non-profit or advocacy focusing on transitioning adults. In the 7 months since my diagnosis I have learned first hand how there isn't nearly enough support for late diagnosed adults or those individuals in their early 20's looking to gain independence.

After my dx my therapist told me this and I offer with hopes that will help you in your process moving forward.

She said " think of your diagnosis as your high school (your tribe so to speak) and as you find your place within the tribe it is like figuring which folks you'll sit down with and eat lunch with in the cafeteria". I had some difficulty accepting my diagnosis only because I did not identify with some of physical aspects that are often seen. such as stimming.

I say take it day by day. I can understand how some things might be difficult for others to understand even when they appear to be simple on the suface. With regard to your boyfriend, it sounds like there might be some opportunities to share insights about your anxieties and how them stem from your ASD. Hope all is well on your side of the pond.



AnonymousAnonymous
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16 Jun 2017, 4:50 pm

Welcome to Wrong Planet! :D


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LostGirI
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17 Jun 2017, 7:24 am

Richardf269 wrote:
LostGirI wrote:
SharkSandwich211 wrote:
Welcome to the wrong planet!! ! You are not alone. I haven't worked in over a year and a half. because I wanted to figure out my deficits and create better strategies...but haven't been able to get all of that figured out yet. I was diagnosed last year at 43. I have found that adult oriented services can be a little more difficult to come by; hopefully that is not the case in your area. I am sure the wrong planet will be a good source of information and support as you try to better understand your life through the lens of autism. It is a process. You're in good company here. Again, welcome.
Shark


Thanks Shark. I felt absolutely terrible last night and like I didn't really have anyone to turn to for support other than a male friend of mine who I have been trying to steer clear of as it's getting a bit complicated. There was no-one else I felt who would listen and offer me some comfort and so I caved. He is visiting me later so hopefully that will help. I have also forced myself out of the house today on a bike ride so that was very good for me. I actually went out on my bike, on my own and on a Thursday! Sounds daft but that is a biggie. It was so hard, I think I was a bit ambitious with the route I picked but hey, I made it. Time to soak in the bath and have something to eat.

Can I ask yo, before your diagnosis were you able to work full time? It's thinking about work stressing me out. It's all well and good my bf telling me he doesn't know why I'm stressed out. My parents will pay my bills and I can build up my hours at work and if I can't do full time then I go back to being self employed. Just like that. He said he's not being mean but he just doesn't know about ASD and he doesn't understand how I feel and what's stressing me. It just makes me feel even more lonely :-(


I know how you feel, as I think most here do. I've also been alone most of my life, and it's not easy to deal with at 34 to realize that I am quite lonely, and depression has taken it's toll on me over the last 30 years. I'll talk if you ever need someone to talk to.


Hello Richard,

Thank you for that. Same goes to you, if you ever need a chat just send me a PM .


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LostGirI
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17 Jun 2017, 7:26 am

Thanks for all the welcomes, replies and advice. I'm not sure how to respond to them all on here without spamming. I'm still finding my way around here :)


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AllanB
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17 Jun 2017, 9:13 am

Welcome! Like you I'm new on the forum. I was recently diagnosed (three days ago). I'm 40 years old and from Denmark. :)



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18 Jun 2017, 12:10 pm

LostGirI wrote:
before your diagnosis were you able to work full time? It's thinking about work stressing me out. It's all well and good my bf telling me he doesn't know why I'm stressed out.


I wasn't diagnosed until 49, at which time my 30+yr career was reaching the end of it's track. I loved my job, but it barely kept me alive as it was, I knew it was a dead end, in terms of preparing any sort of future, and when the desktop PC made it simple and easy for employers to automate, hundred of thousands of workers in my field were doomed.

However, in answer to your stress problem, I can certainly relate. As much as I loved what I did (and I was quite good at it, if I do say so), my pattern was this:

1) Take a new job, get along with everyone just fine, please my superiors with my excellent work and good humor - for about 12 months.

2) After the 12 month mark, useless middle management personnel, in an attempt to make themselves appear busy and productive, would begin to make changes - altering schedules, reassigning responsibilities, implementing pointless new policies designed to "challenge employees by pushing them outside their comfort zones," etc., etc., blah blah blah, which of course sent me into a spiral of anxiety attacks and internalized meltdowns, at which point I would simply balk and say "I can't do that."

Because I had no diagnosis, and was considered as capable as the next person (albeit rather quirky and odd), "I can't do that" was interpreted as willful stubbornness and defiant insubordination. After another 5 or 6 months of mounting stress and conflict, I was invariably fired (I could not afford to quit, as it would have made me ineligible for unemployment benefits).

3) Once fired, I would apply for unemployment insurance and spend the next 8 -12 months hiding in my home, decompressing from all the pressure and stress. When I finally felt recovered enough to face the real world again (or my unemployment ran out), I would go back into the job market, find a new gig, and start the whole process over again from square one. I repeated this ritual, step-by-step, over and over again, for more than 30 years. I had no choice - it was either that, or wander the streets as a homeless indigent.

Once I was diagnosed, and crossed the government's imaginary qualification line at the age of 50, I've not been required to continue subjecting myself to that nightmare. Though it would supplement my income to take some sort of job now, I can't abide the idea of becoming trapped by the diagnosis itself, in a situation where I'm unhappy, but the employer won't fire me because it would look bad to terminate a disabled worker. Then the stress would never end. Besides, there are so few jobs that fit my autistic obsessions and I couldn't stay focused on anything else.

Autism is as much a debilitating handicap as being paraplegic or having schizophrenia. It may be quiet and invisible on the outside, but it's a raging storm of anxiety, stress, panic and self-loathing inside our heads.


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18 Jun 2017, 12:32 pm

Hey, welcome :)

Seems it hits a lot of us later in life when we dont have the energy to put on the ''mask'' as well as the expectations of society and the fact one realises it ''isnt going to go away''. I see a very clear pattern of people i their late 30'early forties getting diagnosed. Also fully relate to people not understanding or listening. This is a common problem for those on the spectrum dealing with NT's....
It is hard to find answers when you dont know the questions to ask. Try not to rush things, many answers will come unexpected and you will realise there will be a few things you perceive everyone else in life to experience only to find it is only yourself or people on the spectrum...

Dont be surprised if it becomes somewhat of a special interest! haha ...

Just take it slow. Dont be surprised even with doctors etc if you get a strong feeling ''they dont get it'', because you are right, they often dont ( but seems you were lucky and found one that does :) )... If you are able to, try to find a specialist, doctor, Councillor etc that has experience on the spectrum, this will save you further pain and headache!
I put my trust in the system and soon found out how wrong i was, i dont want to see you go down the same path...

Just take it easy and slow... Any previous perceptions will soon disappear as you will realise what you hear and see in the media isnt even close to what many experience. So take no notice of what NT's perceive...

Aspies have been around for a very very long time, this isnt something new, as it is often ''hidden'' and we find coping mechanisms to fit in, we have gone undetected for a long time, only in the last 10 years has there been more publicity surrounding our diversity as every human being is diverse... Just be glad your not part of the sheeple ;)



LostGirI
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18 Jun 2017, 1:15 pm

LostGirI wrote:
before your diagnosis were you able to work full time? It's thinking about work stressing me out. It's all well and good my bf telling me he doesn't know why I'm stressed out.



Once I was diagnosed, and crossed the government's imaginary qualification line at the age of 50, I've not been required to continue subjecting myself to that nightmare. Though it would supplement my income to take some sort of job now, I can't abide the idea of becoming trapped by the diagnosis itself, in a situation where I'm unhappy, but the employer won't fire me because it would look bad to terminate a disabled worker. Then the stress would never end. Besides, there are so few jobs that fit my autistic obsessions and I couldn't stay focused on anything else.

Autism is as much a debilitating handicap as being paraplegic or having schizophrenia. It may be quiet and invisible on the outside, but it's a raging storm of anxiety, stress, panic and self-loathing inside our heads.


Are you in the UK? Are you saying you are able to manage on benefits now? Thanks for your comments


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LostGirI
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18 Jun 2017, 1:20 pm

1Biggles1 wrote:
Hey, welcome :)

Seems it hits a lot of us later in life when we dont have the energy to put on the ''mask'' as well as the expectations of society and the fact one realises it ''isnt going to go away''. I see a very clear pattern of people i their late 30'early forties getting diagnosed. Also fully relate to people not understanding or listening. This is a common problem for those on the spectrum dealing with NT's....
It is hard to find answers when you dont know the questions to ask. Try not to rush things, many answers will come unexpected and you will realise there will be a few things you perceive everyone else in life to experience only to find it is only yourself or people on the spectrum...

Dont be surprised if it becomes somewhat of a special interest! haha ...

Just take it slow. Dont be surprised even with doctors etc if you get a strong feeling ''they dont get it'', because you are right, they often dont ( but seems you were lucky and found one that does :) )... If you are able to, try to find a specialist, doctor, Councillor etc that has experience on the spectrum, this will save you further pain and headache!
I put my trust in the system and soon found out how wrong i was, i dont want to see you go down the same path...

Just take it easy and slow... Any previous perceptions will soon disappear as you will realise what you hear and see in the media isnt even close to what many experience. So take no notice of what NT's perceive...

Aspies have been around for a very very long time, this isnt something new, as it is often ''hidden'' and we find coping mechanisms to fit in, we have gone undetected for a long time, only in the last 10 years has there been more publicity surrounding our diversity as every human being is diverse... Just be glad your not part of the sheeple ;)


I definitely feel like I could do with some counselling right now.

I also think that yes, autism is already becoming a bit of a special interest haha. I think my mum is getting frustrated cos I keep reading about it and I've been stressed and overwhelmed. It's something I need to do though


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I'm working with ASD, generalised anxiety disorder and recurrent depression and they frequently kick my ***