Published on 12, July, 2020
OK first thing
After procrastinating about this for a week, theh hours today of doing everything but write, the start writing it, in the middle of Stimming (get up/get down) and discomfort in having to stay around one place for a while, then a whole hour writing it, I managed to delete the entire post. This has left me feeling trapped, manic and almost depressed as I had opened up and been raged for a while.
In some ways this is actually proves some things I was trying to say anyway, as it's the way things are doing this kind of stuff. This post now might be disjointed as part of me will be thinking to what I wrote earlier, but doesn't come out the same. Will just write as it comes to me.
To give a backstory, was diagnosed with Aspergers/ADHD/HFA with comorbids of OCD/Anxiety and PTSD. This has only happened over the past two years, before then obviously there have been big struggles and issues but knew no different. Left a job environment also around a year and half ago and since then have been on JSA. As with school/college/job this has also caused big anxiety as although it only normally been every two weeks it's still not an environment that works for me regular on environments which you look at there are not either. The time and space away from that though have meant I have been able to learn and grow a lot more about how things are, and also realise how wrong a lot of the things I have been around (NT environments) are for me to be me. Eventually signed off sick from the JSA as after a while i was told about a work programme I would have to go to which would have been even more regular and again not a good environment. During this time have spoke with Drs etc who advised and had no issue signing fit notes to do this. Time away from that has allowed me to grow even further but only last so long and will have to convert from JSA to ESA. There are obviously issues day to day but having time and space to deal with them in my own way. There is a load I could add but that's just what got me to here.
Another thing I remember writing the first time (!!!!) was that away from all this when I am not in a medical environment or calls to advice lines/forums etc, it's not always the way I see things, a lot of it is labels. Although it is very real (and I think I take for granted how it is, the past hours frustration and episode shows that!) I am me, and it's finding and building things that work for me and knowing what is and isn't right. something iv read on here that was really well said though is the fact that when you are in a good environment for yourself (like now) it's hard to then portray how it is when the environment isn't that way, without time and space or an honest mindset for you.
Have looked and had advice on the ESA procedure and could be easy to fall into thinking of almost being too "honest" in the ways that Iv said above and not getting over the struggles, someone I called the other day said you could almost appear too positive. The support group is what I am looking to get, as the other work group option couldn't be more of what wouldn't be right in terms of environment and interaction etc, but it is getting that across well. An example of this is I can drive (took 10 times to pass/heavy test anxiety/couldn't eat etc) but it wouldn't make a driving job with targets or routine or any pressure suitable. I can use an iPad to write this, but am forever stimming (standing up/sitting down) and have heavy mental fatigue and burnout, as well as the uncomfortable feeling of being in one place. I can talk, but in environments that are uncomfortable it's shuts down or becomes a mixture of overtalking and over sharing which can make things strange, it's only since leaving the work environment I can say some things to my own mum and dad! Think sometimes the stereotype of this condition can be to be dumb or limited and that couldn't be more wrong, but it doesn't mean there aren't issues that rule out certain things. A lot of this comes to me from times when I knew no better as I didn't know any of this, and the trauma from that still affects me day to day.
I said all this a load better in the first draft I did, but have looked at the ESA setup and would be looking to the support group as the way to go, am now begining to feel burnout from all this writing and thinking what I wrote before, any thoughts would be appreciated, if only you'd seen the post I did before!
Maybe just me then :)
Hey guys, have thought to post on here loads as iv looked more into things, spoke with the people at the National autistic society, Rethink and a local centre, but procrastination and mind fatigue never gets me to do it, so will make the most now iv got here!
the crazy thing with all of this "process" is it takes away from what iv learned about myself and the growing iv done so far, as I have to deal with this is a different kind of way, most times I think about it I end up with sleepless nights or a blown mind, similar to when I was having to go to JSA every 2 weeks, or before that work/college! Having time and space away from that has meant everything is natural and in my own headspace, which is the way forwards. Can almost read too much on all of this, good examples, not so good examples from people's experiences, then a load of thoughts and questions that fade out after a while as i move on to something else (all this is very stimulus driven).
Am looking to be very thorough on the ESA form, and show clearly the reasons that the support group would be an assistant as I learn and grown and look to create a world that works for me by having that time and space, the other option of a work group is a long way away from that and couldn't be worse in terms of progressing. one thing I have had mentioned to me is that can almost come across as too positive, as the focus is on the issues and confinments that aren't naturally a way I see it. An example would be today, I spoke with an adviser for a while on the phone clearly, but have to have the talk outside my house as I have to be in my own time and space, I take that for granted. As I do opening and closing doors and getting in and out of the car once iv parked, or having sleepless nights or fatigued after having to concentrate for a little while on something, or procrastination etc. As right now I'm in an environment where I can take that and grow.
is there anyone here with experience of this in this way? Would appreciate your thoughts.
Thanks
Ok am in a dark place with it all right now, no clarity of thought and just a mind that is spinning. Hard to get out what you want to say without this, so now it's amplified. What it reminds and relates me to so much is how things were before I got away from the job I was in, school/college and then that job all had this feeling more often that not, I always was having to try and get out of round things or feeling uncomfortable and freaking out at things that with perspective would be seen differently. Where an NT thing might be to think that a job wasn't working so to get another, mine what always a mindset of feeling trapped in and raged and having to fight all of the time, a bit like this now. The big overall thing is to get and recognise things in myself that I then can project into the world, this ESA system is nothing like that, it's almost like I'm having to fight for the right to be me (Maybe overthinking). I dint see things normally and can'ts and don'ts because now I'm an an environment that is better. I don't have to manage social anxiety/overtalking/over sharing/social cues as much because again I'm away from that, it's on my terms. i still am up all night jumping out of bed and back in, or opening and closing doors, or avoiding cracks in the pavement, or having to deal with thoughts from the past or finding it hard to deal with doing things, but again there is time and space and my own vibe. I haven't got to "adapt" to something that later leaves my mind broken and fatigued.
<p>Hi thanks for your replies and interest.</p><p>Have phoned a few places and looked at information the past few days, have heard from two people, one who said that because I could talk to her on the phone for 15 minutes that would be seen as "can hold a conversation" so why not go to a call centre etc (couldn't be more wrong) They also said that High functioning would mean that id be looked in a way that I can do things, it was only when I explained more about co morbids etc that they said to apply. This is a horrible way to phrase it I know, but it's almost as if I aren't "thick" enough, which is nothing to do with the emotional part of it, more just a stereotype from a place of no knowledge, I mean theres no "acting austistic". I can feel a depression I haven't felt in a long while, bought about by the situation, which is exactly the type of thing I'm meaning. If I was in another environment that wasn't right for me, my communication would take a hit. If I had to experience "false talk" like you hear in most work environments, the same thing would happen, as well as an anxiety towards it.</p><p>What I hate more than anything is the feeling that all the progress I have made is being put to one side to play this "game". The reason this whole thing is done I so I can get the time and space to keep growing!</p>
Hi again,
You can get ESA (support group) for autism, as I do. I'm high functioning, also trying to do a PhD part time (very part time hence ESA). Don't be put off by what others say. I also get DLA, now PIP, so make sure you have applied for that as well, if you don't already get it.
Good Luck,
Margaret
Thanks mid
The past 3nights have been a big flashback to how things were before I got away from a job, and even away from the JSA. Sleepless nights, thinking all kinds of things and situations, even doubt about the whole thing,because I am me and obviously used to being me doubt of whether you are just "being stupid" comes in, or thoughts of what could happen. It's like iv got to prove I me and get into labels etc, which isnt normally how I think or approach it.
Called a local austistic/aspergers helpline today, and this was the first example of someone's original answer being that I won't get anything or anywhere with this, she said a lot of what I'd been concerned about which is that because it is "high functioning" it's harder to get across anything, it was only when I mentioned co morbids that she said anything about how to approach the forms. With a lot of these phone calls its me talking for all of it (overtalking) and then wondering where I went with it all, a situation she spoke about where you could be sent into different work situations regardless of how you are and just told to "adapt" is exactly what I'm looking to step over, don't want to set fire to everything iv learned and where iv got to, couldn't have even said the things I did to her a few years ago, that is because of having time and space.
Mind is blown, am now anxious and arsey/snappy, this is exactly how I was for many years! Feels like there is no space.
Hi Woohah,
I think most people on here will know the feeling of whee you are coming from, so don't worry. I tried to google as much as I could about ESA before filling in the form. Yes, be honest, be too honest and think of the bad times. It may leave you depressed, but it may give you the points you need to get ESA.
I get ESA (support group). I can't do a job. I've had them, many of them, but can't keep them. They send me crazy, literally. There is a group who charges for selling you a booklet about how to fill in the form - their name escapes me at the moment, but there are other sites out there to help free of charge.
Keep everything factual on the form and try to use the language you hear the doctor use. But you may also say you need encouragement to do this, that and the other. Put it down if this is true.
Hope you have a better day today.