Published on 12, July, 2020
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
Yeah, I’d go with the old form as well, like NAS39248 said.
I think what I’m hearing you say, which I can relate to, is that some of the ‘symptoms’ (for want of a better word) may appear to have improved, because of a change in environment. However, if you’re like me, I’m still very much in a transition stage as my new found awareness isn’t yet fully established in me so the slightest thing can put me back to where I was before.
Go with that old form and if anything, beef it up. I’m rubbish at the assessments, as I’m too honest and take things too literally so the guy who helped me said you have to fill it in as if this was your worst day ever.
Good luck. I know what it’s like. My life kind of goes on hold till I’ve got these things sorted out. I’m just waiting the outcome of my esa face to face assessment. Fingers crossed for both of us, but I would definitely go with the old form because like you said, it’s a life long condition and that one worked last time. And if you could get a psychiatrist or doctor to put that in writing, about it being a lifelong condition, it might help, but not necessarily because even though it’s a life long condition it might not always effect us in the same way.
Obipviously recognise how things are with this process, but would want really for it to be sorted on paper due to the effect of going through all of this, traits and symptoms have heightened already and the cloud will stay over until this is sorted.It is very hard to describe how things are as it’s not like you spend all day looking to flare them, you can almost take for granted things that are just a part of your day.
Have made some calls today, have an advocate who hasn’t yet got back to me, and a councillor who seems to hint at wanting to “work with me for some appointments” before writing anything, which isn’t really what I am after, just looking for a supporting letter about the condition and the fact it is lifelong, things are the same, and that going through this would be damaging to mindset and cause anxiety uneccesarily. Am not looking for her to get into the ins and outs of the condition, have already been assessed and diagnosed.
There is another person who said they will support too, in terms of DRs though, they were that hit and miss for the original assessment and that amateur in their understanding I haven’t been back to any medical thing since and have dealt with this on my own using outlets if I have wanted to speak with someone (usually about the heavy anxiety I have had about ever being reassessed!)
Would the best thing be to use the old form (maybe adding if necessary) and then putting all the supporting evidence I can get with it, stating that it would be better to do a paper assessment due to the affects? Or would it just be passed over to being face to face anyway?
The whole “Dr letter/evidence” thing has heightening a load of anxiety and thoughts, now spinning thoughts and situations, did send them the original letter same as before but they didn’t contact a GP last time. Also like i said the Drs surgery isn’t one I have been to anyway, and haven’t spoke with medical people in years as they were so hit and. It’s, chose instead to speak with a support worker and my advocate. A GP situation would have been a very short appointment to talk about an in depth thing, and they would only have sent me to a mental health centre anyway as they did before
Now something didn’t expect
Gkt 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?
Ok an update (not even sure when I last posted here)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.
Evidence wise I have a few outlets but in terms of anything “medical” haven’t seen anyone since before the last assessment, mainly because there was so little understanding, long story short it was a locus doctor that actually got me evidence on paper back then.
Dont know the descriptor that was used to get the award but obviously it hasn’t changed,especially if it was dealing with change as this is showing! There isn’t really an “improved”, the catch 22 is that any mind improvements or perspectives are now actually fading because of being on this 24/7, then as stupid as it sounds it’s as if you feel you have to stay like this so you can remember things to say and how to express! Which isn’t healthy obviously.
what you say about newspaper reports etc might be 0.1% if these cases, shouldn’t mean there shouldn’t be a better way for diagnosed genuine cases. I don’t view this as a “disability” or “condition” day to day, I am me, but right now it’s as if I have to open up all old boxes in my mind to bring the dark out, which shouldn’t have to happen. Have concerns about the advocate who came with me last time not being able to or thinking “well he should have sorted things by now” or something. As well as a whole load of what ifs and thoughts. Really can’t throw away the “identity” I have built up through being in the right place and environment. Don’t get it wrong it’s not perfect and there are still issues day to day, but this is flaring them to an extreme.