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Reassessment- Form arrived
PolaBear
Member Posts: 8 Listener
Hi People
Just going to type and see where things go, have received an ESA form today, have been on ESA support group for just under two years now. Had no idea today was the day but the concern has affected me throughout the whole time tbh, always a cloud thinking “what ifs” or imagined situations or comments.
I am diagnosed as Asperger/High functioning autism, with co morbids of Trauma, ADHD, and OCD (stimming). Was late diagnosed so for most of my life had no idea of any of this, aoart from the obvious feeling that things weren’t right in the environments that I was in. Was granted ESA support group after going through the process of advocates and phone calls and good people and not so good people and Drs and Consultants etc etc, which had a big affect on the traits and symptoms associated with this “condition”. Getting to environment where I am away from environments that aren’t good for me has meant that I have learned and grown so much and for the first time put together some kind of identity and perspective, though day to day things aren’t “better”, I have to time and space to deal with them.
Had heard something about the idea that if a condition is a “lifelong” condition, that there should be less of an assessment process due to the knock on effects, until this is sorted it will now have a big impact on state of mind and thinking, and would be good to avoid that as much as possible, things haven’t changed it’s just the fact that I have my own space to shape my day. Another concern as stupid as it may sound is the idea of “forgetting” how things are because I’m not in a situation right now that exacerbated them (though going through this will actually bring a lot of them to the forefront). Is this idea something worth looking into, as there should be enough information on the form (and some people to provide evidence) to say that this is a condition that won’t change and there isn’t any good reason to add pressures??
The esa form I filled in a few years ago I made a duplicate copy of, so the information is still right there, though have never looked at it since. Would copying that onto the new form be a good idea, or would it be better to think from a fresh mind? This was a form that got the result it was supposed to (support group) so as someone said to me today it would take a valid reason to change that sitatuion tbh?
The concern as it has been throughout these days and months, has been the fact that there are good people who have understanding, and ones who just don’t or see it as a stereotype. Can only speak for myself but things can be less apparent than is always shown I guess, so holding a conversation doesn’t necessarily show the burnout or fatigue after, or being in a bad environment doesn’t always show the meltdown or the withdrawal that comes with it. It was only getting away from those situations that I realised how depressed and closed in my mind had been for my entire life until this point, I knew no different so just went along with what everyone around me was doing. The term is known as “masking”, which then has a big effect on the other side of things.
Any thoughts or information would be really appreciated, haven’t stopped today since getting this letter, so the comedown soon is going to be big and filled with dark or uncomfortable thoughts, anything said from experience is valued.
Thank you
Just going to type and see where things go, have received an ESA form today, have been on ESA support group for just under two years now. Had no idea today was the day but the concern has affected me throughout the whole time tbh, always a cloud thinking “what ifs” or imagined situations or comments.
I am diagnosed as Asperger/High functioning autism, with co morbids of Trauma, ADHD, and OCD (stimming). Was late diagnosed so for most of my life had no idea of any of this, aoart from the obvious feeling that things weren’t right in the environments that I was in. Was granted ESA support group after going through the process of advocates and phone calls and good people and not so good people and Drs and Consultants etc etc, which had a big affect on the traits and symptoms associated with this “condition”. Getting to environment where I am away from environments that aren’t good for me has meant that I have learned and grown so much and for the first time put together some kind of identity and perspective, though day to day things aren’t “better”, I have to time and space to deal with them.
Had heard something about the idea that if a condition is a “lifelong” condition, that there should be less of an assessment process due to the knock on effects, until this is sorted it will now have a big impact on state of mind and thinking, and would be good to avoid that as much as possible, things haven’t changed it’s just the fact that I have my own space to shape my day. Another concern as stupid as it may sound is the idea of “forgetting” how things are because I’m not in a situation right now that exacerbated them (though going through this will actually bring a lot of them to the forefront). Is this idea something worth looking into, as there should be enough information on the form (and some people to provide evidence) to say that this is a condition that won’t change and there isn’t any good reason to add pressures??
The esa form I filled in a few years ago I made a duplicate copy of, so the information is still right there, though have never looked at it since. Would copying that onto the new form be a good idea, or would it be better to think from a fresh mind? This was a form that got the result it was supposed to (support group) so as someone said to me today it would take a valid reason to change that sitatuion tbh?
The concern as it has been throughout these days and months, has been the fact that there are good people who have understanding, and ones who just don’t or see it as a stereotype. Can only speak for myself but things can be less apparent than is always shown I guess, so holding a conversation doesn’t necessarily show the burnout or fatigue after, or being in a bad environment doesn’t always show the meltdown or the withdrawal that comes with it. It was only getting away from those situations that I realised how depressed and closed in my mind had been for my entire life until this point, I knew no different so just went along with what everyone around me was doing. The term is known as “masking”, which then has a big effect on the other side of things.
Any thoughts or information would be really appreciated, haven’t stopped today since getting this letter, so the comedown soon is going to be big and filled with dark or uncomfortable thoughts, anything said from experience is valued.
Thank you
Replies
Have a a few people who could provide evidece, though a councillor I speak to seems to want to have sessions and “work through things” to see how things are, in a way I understand this but really am just looking for a basic statement saying about the condition, not looking to open up boxes in my mind. The advocate who came with me to the assessment originally hasn’t yet got back to me either.
Appreciate your thoughts
Was looking more to provide enough written evidence for it to state that this is a lifelong condition and nothing on the original form in terms of “descriptors” has changed, and also that a paper assessment to do this would be better than the anxieties and knock on effects a face to face one would cause. I do understand this doesn’t always happen.
The larger concern is also not losing or damaging a lot of the growth and mindsets and perspective I have and am gaining by being away from neurotypical environments and in a more “comfortable” one (don’t get this wrong there are still issues)
What you mention about severe conditions and no reassessments etc I totally understand. Guess it is a similar thing to what you say about your own situation. Right now though this is all having an effect on my mind and will become a big thing till it is sorted. Am looking to do it in the smoothest way possible.
Not sure what the reason or descriptor was,but it was a form that got the result. As nothing has changed (only the environment, which is away from NT situations).
The form was very detailed, but obviously was from 2 years ago, although all the factors will be exactly the same. The evidence will be supporting the fact that this condition does not change, as well as saying that going through this actual heightens the distress. Remember the advocat saying the “affects of change” was a big issue, as this whole thing now is proving!
Hqve phoned a few people and advocates to support but all seem busy which is understandable but right now it’s hanging and will do so until this passes
The advocate got in touch pretty soon after writing on here and spoke with her, she was great again and helped go through the form, adding evidence from the last time, original evidence from an autism support person I have spoken to over the past few years (who was also great and went into great detail) and then added some sentences herself. Sent the form off 31st of January (had to be there by the 14th).
Its almost as if its a numb time where until this is sorted nothing can be done, which is kind of a contridiction as it’s not like things happen externally a lot, but there are obviously thoughts of things even if they don’t happen. Right now it’s all this, even had a freak out when I had what turned out to be an annual letter about ESA but got to wondering if it was saying it had all been processed, even ended up phoning the DWP over it which never like to do but just couldn’t settle. Obviously know that a lot of this is the condition itself (unti things are sorted mind just spins) but still it all feels like everything is “on hold”, concerns have had me literally using most money (you know it’s not exactly a lot anyway) on paying things in advance “in case”, which again is irrational I know but sometimes get to thinking how fragile this all is.
Have distracted and self soothes with movies and video games which is something I did years ago with other situations, it’s again not something I have grown to do or feel I should really but it’s almost as if when you are thinking about it you are looking to process and when thoughts are on something else you are thinking you should be thinking about it incase you have to articulate! The advocate has said she will help with anything more again, same with the evidence provided but it never seems to settle thoughts, it never really did at any time anyway to be honest.
Now something didn’t expect
Got a letter this week saying an assessment is scheduled for a couple of weeks, so have contacted advocate about this.
But then today have had a letter from my doctors surgery saying that they have received a form from the DWP for a GP to complete. The issue with this is I have never been to that surgery or spoke with anyone there, the surgery changed a while back and was registered there, but the medical back and forth though diagnosis and consultants and bad information (long stories) was so hit and miss that once and award was originally made never went back to any medical centre anyway. This wasn’t a lazy thing, they had again changed consultant and never arranged another appointment. Instead I stayed close with my advocate and also spoke with a support worker who knows all the back story and has provided evidence (both have) and then attached the original diagnosis sheet.
This is comcerning and has cause a load more spinning thoughts to what was already a load right now. Can’t exactly go to a GP I don’t know and ask them to fill in a form in a certain way, from experience last time a load of doctors just don’t want to know.
Any thoughts?