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Fearful of PiP assessment

Autistic Introvert

So I finally got my appointment today after waiting nearly two months. I know there's no way they'll do an assessment for me at home, but I'll definitely have to change the appointment as there's no way I can get somewhere that's 47 minutes away by car with an appointment scheduled at 9am! (will be going with my partner, because just the thought of travelling somewhere I've never been before on my own is enough to nearly send me into a panic attack).

I know this seems to be a common subject here on the forums, & I hate admitting this but I am stressing out beyond comprehension about this damn face to face assessment.

It's taken a lot for me to come to terms with the fact that my recently diagnosed ASD is the root for my anxiety & a concoction of other problems, that I know I can never 'get over it' like some people have suggested throughout my life. So for me to be a nervous wreck when I make phone calls concerning appointments, it makes me want to slap myself for being such a damn wuss about it. I know I can't control it, & I still need to come to terms with a lot of stuff, but this stress is ridiculous, it's also lead to some minor panic attacks. 

I've read that quite a few people have had some really bad experiences with going to face to face assessments, & even had their claims denied & had to appeal. I made sure I listed out in great detail all of the negative affects of my ASD & how it can royally screw with me in all sorts of ways on the form (obviously in a more explanatory & eloquent manner then saying "it royally screws with me" haha) & made sure to explain my 'worst days' as the citizens advice bureau suggested. 

I didn't have much support in my pursuit for a diagnosis, I had people close to me tell me directly; & on numerous occassions, that there was no way I was autistic, & more or less told me to shut up about it. So I'm terrified at the idea that someone at the PiP assessment will tell me that in 'their opinion' I'm not eligable because of some misguided stereotypical perceptions of autism, especially as I'm female.
I've called them twice so far for different reasons & the ladies I've spoken to have been very patient & understanding, so I suppose it's a fools hope that maybe the assessors will be the same? 

  • I know I really did stress out whilst waiting , severe panic attacks.
    When I did get in to see the nurse, just under 2 hours late she knew my friend ( I think they went to the same church) and she recognised me from somewhere.I'm trying to place her. Tho she did read the report from the doctor who diagnosed me as being on the autistic spectrum, and asked about my what my mum describes as "traumatic" birth and me being a prem baby, and how I was briefly starved of oxygen for a few seconds.She did say that maybe she couldn't carry out the assessment as she feels it more appropriate for a doctor to assess me, the only downside to that is I'll have to trek back to Milton Keynes again, and waste another 2 hours waiting!!! Tho she did say do I have any info on those events/my health in 1971!!!

    It would appear that it seemed that the Milton Keynes centre take time to read notes and write up, I gather that's why three others were waiting 2 hours plus, unlike that shyster charlatan I saw at Luton on last assessment, tho didn't have my ASD diagnosis then, but regardless of if I had or not I think he would still have lied about me. I'm not keen on using stairs , especially going down , as I've almost fallen down them before, so more than the flight in a typical house freaks me out, and I haven't lived in a property with stairs for 19 years. Luton is on the sixth floor, tho in the event of a fire I would be slow getting down stairs. Perhaps going to Milton Keynes was the better option. Maybe I can speak to Autism Bedfordshire re seeing the doctor , and see if I can find any info re 1971!!
  • in reply to Autistic Introvert

    Ah stimming that's a new word for me. I was thinking of strimming a lawn. As a kid I would often bite the tops of pens or pencils , tho not so much as an adult, my think is pinging as an alternative to burning, or spinning, I tend to like visual things as well as audio. I don't think I've seen fidget cubes, but would like to get one. As re spinners my one is black, I like it, but have seen shiny or multi coloured ones or ones that light  up, would like to get some more, would be great to set them all going at once. IT's weird with visual things I've got  multi function lights at home, tho some settings seem too hectic, yet I love the visuals of the fair and whizzing round on the Waltzer. I know I went to RAF Museum in Hendon a number of years ago(before I know I was an Aspie) and I loved the flight simulator of a WW1 Dog Fight, I felt I really was chasing The Red Baron in his Fokker Wolf triplane. I had to do a Tornado over the Welsh Valleys!!!

  • in reply to KillerQueen1971

    Have you tried using a fidget cube? I fidget a lot with my hands too; & having the cube helps me change up between clicking something, rolling my thumb over little clicking ball, moving the joystick etc

    You can get them relatively cheap. I managed to get a 12 sided one, I really like it but sadly it's a bit too big to just put in my pocket like the cube. 

    I did also get myself a chewable stimming necklace. The only downside is it's a bit too big to keep in my mouth, so I have to hold it if I want to chew on it Disappointed

  • in reply to Autistic Introvert

    Just put my fidget spinner in my bag, also got a charity wristband to ping, should I get stressed. The Royal British Legion seem to do OK out of me , tho  happy to support them as I know a veteran with PTSD, tho was in a relationship with him, tho tho things became more platonic, after having a run of womens problems, which I'm currently trying to resolve. I know sometimes I need to spin or ping, usually as an alternative to burning.     

  • in reply to KillerQueen1971

    We've had ample of problems in the past with the benefits system, like housing benefit etc. It kind of says a lot when you call your housing association to inform them that your benefits have been temporarily suspended (because of ONE missing piece of information), & you can hear the person on the other end of the phone give an audible sigh of annoyance, because they've had so many people call them, & this happens every year. That housing association lady at the customer service even had a few interesting things to say about the people that deal with the benefits system haha. 

    & yep; we had the old 'lost paperwork' tid bit too. At one point; after we had to send a folders-worth of information to them, we didn't hear anything back for about a month. So my partner called them to find out what was going on, they told us they hadn't recieved the information, he assured them we had sent it. Ten minutes later we got a call back, the paper work had arrived about three days after we had sent it, but no one had bothered to pass it on to the relevant department to get it sorted. The stress all that crap caused was beyond ridiculous at the time!
    Bunch of ingrates.

    I have this horrible self-harming stim of chewing on the side of my tongue, which leaves it bleeding & feeling sore. I also bob my leg so much it can leave my muscles feeling really tired, & I rely on listening to music with my earphones or headphones a LOT. I plan on taking my headphones with me, & my fidget cube, when I finally have to go to the face to face assessment.

    I really hope it works out for you & they help you out. Good luck with your appointment :)

  • I don't get DLA or PIP, but got an ESA medical tomorrow, am dreading that, got a friend going with me. This is my first one sinse being diagnosed as an Aspie. Lost in 2012, tho won on appeal in 2015, the DWP by their admission lost my paperwork, HMCTS were going to disallow appeal as it was "late" tho I proved that I requested the appeal within the timeframe allowed. I gather as the DWP know I did ESA permitted work last year they probably think I can hold down f/t paid employment. My doctor at the time wrote a letter to the appeal asking I be in the support group but allowed to do permitted work. I did get put in WRAG, just come to the end of that now.  I know when I got diagnosis I seemed to look beyond the doctor. I'm hoping tomorrow I appear stressed. and panicky. OH yes will have to wear a 3/4 sleeve top or pne with billowing sleeves to show where I've burnt ,myself with a lighter or a curling wand due to stress. I ping a wristband tho sometimes it isn't enough!!!