I’m crushed 😞 PIP zero points
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ok thank you, I’ve no idea what I’m doing 😬 hubby has said he will help me. I know I should score highly on the questions about communication with others, going out and planning journeys. It’s that area I feel they taken things and spun them.
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Another thing-what is the relevance of a job I had 12 years ago? I’m applying for PIP for how I manage day to day now, not 12 years ago??
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good luck for your doctors appointment goes well for Monday and that is ridiculous that they could only score you 2 points in the end keep fighting and you will get there.
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No relevance at all really. They just make it up as they go along. Two of the most frequent reasons for refusal are that the claimant passed a driving test decades ago (even if they can't drive now) and they attended mainstream school or higher education decades ago… Again, totally irrelevant, but this is the only system in place so we just have to try and make the best of it.
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Coming into this a couple of days late, but this happened to me as well, almost exactly as you experienced it. I'm also autistic, I also mask well because I was diagnosed as an adult (I was 23).
There were a lot of errors in my report from what was said in the assessment and what was in the decision letter. But I did go to tribunal and I did win, and when my review came up a few years later I didn't have to contest the result. So. Is it worth the fight? I think so.
However, take care of your mental health first and foremost. You'll understand this, being autistic yourself, but having to go through such a confrontational, frustrating process takes its toll. Since you already have some difficulties with your mental health, I am glad you are seeking a doctor's advice. And because of this, just bear in mind…The MR will likely also refuse your application. There's a very poor level of understanding of autism, especially for those of us who have learned to mask. They may misrepresent you or your evidence and it might be upsetting. Mine cherrypicked two words from my evidence and used it to bolster false assumptions about autism, rather than looking at the rest of the documents I submitted. So be prepared for that - even if they are that way, don't think it means they've won. It's just a step in the process.
Tribunal means they have to read all your evidence, and make sure you have a copy of all their evidence. Get your husband to help you break down those things and be ready to challenge them. Tribunal is not fun. It's stressful. It's not designed for people with autism, who don't necessarily perform well when put on the spot or in a face to face situation. I suggest putting together a statement that your husband can read for you or which you can give to them at the start of the tribunal. I did this, it really helped, because I was able to put my thoughts coherently and explain why their decision was wrong, what support I needed and so on.
At the end of the day, an appeal can be a long process. Taking care of yourself is the biggest thing. Your wellbeing is the most important aspect, so only do what you feel you are capable of doing.As for masking well, this is a major red flag and shows how badly the DWP understand autism. You can fake being okay, but that doesn't make you okay. There's plenty of research out there that shows the impact of high masking on mental health and general wellbeing. An assessor who understands autism should see that as a red flag. It may be useful to get whoever is supporting your mental health to write you a statement for your MR about the impact of masking on burnout and on your current mental health struggles. It may not work at the MR but may be useful if you go to tribunal.
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thank you so much!! I’m so sorry you faced all of that. You understand and have written exactly how I’m feeling about it all. I’m so glad you got what you are entitled to. The process is brutal and so inhuman
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I just wanted to update.
My husband and I sat down and highlighted all the details that we disagreed with and corrected it with the descriptors.
Actually going through it really shone a light on the injustice of my decision letter and how little is understood of Autism. Still.
O felt much better having it all written down.It got sent and now for another long wait 😏
thanks again for the advice, support and links to help me through. What a wonderful supportive forum 😍5 -
That's great that you got it all filled in @Everythingzrosie we'll all be keeping our fingers crossed for you. Will you let us know how you get on please?
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@Albus_Scope absolutely I will. I’m finding Scope online really helpful so won’t be going anywhere 🙂
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@Amaya_Ringo I just wanted to update to comment again with what you wrote to me. Your detailed response really helps because I don’t know anyone that is autistic as an adult. So to know others experiencing how I feel, is a less lonely feeling. I’m still learning who I really am after masking for so long. To then apply for pip to basically be told I manage so off you go, it really demoralised me. I know how much I struggle but the DWP want you to know how they think in order to get them to understand and make the process so difficult.
I always thought everyone felt and did things the way I have to to get by and to realise they don’t, they are so lucky to be free to live daily without the mental exhaustion1 -
There's a few of us on the community who're late diagnosed @Everythingzrosie we're all here for you if you ever need some support with the tangle that is the 'tism. 😊
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@Albus_Scope I recognised myself in my diagnosed children and that’s why I went for the assessments. I honestly thought I’d be told ‘don’t be daft’ kinda thing. When I was diagnosed, it took me until now to accept it and know that my way of thinking and doing thinks isn’t NT and my husband is a rock. He accepts me for me, until we had our first child ND, who my husband really understands, neither of us picked up on it. Now it’s blooming obvious 🤦🏻♀️😂
I don’t know your story but it’s great to know there are other late diagnosed here ☺️
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It really does open up a whole new world doesn't it? Suddenly the way you think isn't wrong, it's just not thinking like a neurotypical. Which can actually be a huge advantage in some situations. I think most people start their journey with that little "ok, well maybe I AM on the spectrum? No, it's silly, I'm just silly…" 😆
I was diagnosed two years ago, on my 44th birthday, so that was quite an interesting birthday present. But thanks to my diagnosis, I have adjustments in place at work that mean I can work so much more efficiently and I love my job at last. Plus I've learned who I am and to be a bit more gentle with myself. It does take a long while, but it's so worth it, so keep going with that journey of self discovery, it sounds like you've got an amazing cheerleader by your side too. ❤️2 -
@Albus_Scope thank you for sharing your story, it’s great to finally find a place I belong at the grand age of 47. Better late than never 😁
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I took the plunge to reach out at my GP surgery, took a week for me to take that step. I have been given a 45 minute appointment with a Mental Health Practitioner in a few weeks.
In the meantime I am finally reading ‘Taking off the Mask’ book which is an eye opener for me!
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Sorry to jump in on your thread Everythingzrosie but what Amaya wrote is so helpful. Especially about the masking…and fake being ok…..
Ive got Tourettes syndrome and was diagnosed age 24. I am now 51 and at the early stages of getting my autism assessment (2 1/2 years they have told me)
I was so devastated when they told me how long I have to now wait, simply because I have really been struggling badly with my mental health for a good few years now but in recent months have got REALLY bad (ive struggled most my life with my mental health but always just concentrated on it being because I had Tourettes syndrome and depression BUT Now see that Autism was probably the stronger reason I was struggling)
Interestingly, My GP and Tourettes Consultant believe I have Autism too but it was me that had to go to them after doing my own research begging for help and sounding like a banshee for me to even get the ball rolling in trying to now get a diagnosis….
Anyway roll on yesterday,
Ive been begging for help as ive been in crisis for about 5 months…
My GP referred me to Adult social services (3 times) for a needs assessment to be done on me….
My GP has explained I have Tourettes syndrome which not only causes chronic pain but affects me mentally too, CPTSD due to trauma, Im prone to very "dark thoughts" at the moment and am simply EXHAUSTED! (I believe what Im going through is autistic burnout and shutdown)
I also explained to the social worker that I will probably be masking when she arrives (I did mention to her also that a crisis team were sent to my home so despite me "masking" im really really not feeling well) and will be probably be very very anxious about us meeting too as I really struggle with getting my words out especially with strangers.
She emailed me back telling me not to worry as she has experience with autism.
Her response email made me feel "a little bit better"
So, a lady turns up at my home…but before I tell you what she said let me give you a little background to what happened to me prior to yesterdays meeting…
Also I have realised that if someone starts to talk nicely and positively with me I automatically think they are nice and are going to help me.
Sometimes in life I have got this right about people, BUT many times ive got it wrong, especially these last few months. For eg, a crisis team were sent to my home in May this year after the autism assessor who told me the news of a now 2 1/2 year waiting list for my assessment sent urgent emails out to numerous mental health departments after seeing the "severe distress' I was in after our meeting.
A few hours later SPA called me and asked me some questions and despite me struggling to talk I told them the truth with how ill I felt (I wont share on here what I said but I made it very clear how ill I was feeling. Also, because of me feeling very very overwhelmed which made me talk fast the lady on the other end of the phone reassured me she was going to get help for me)
After that call 2 mental health crisis team workers came to my home and started with the questions again (All the times I have made it clear I am in autistic burn out and am struggling to talk and am finding it very difficult to talk too but still tried to answer all their questions.
One was asking me questions, whilst the other was writing on his laptop continuously for the whole hour that they were in my home…
At the end of this meeting they told me that despite seeing me very distressed they could clearly see that I needed long term help BUT they could not provide the help as they only help people for a few weeks. I then "stupidly" thought they will refer me to some other mental health department that could help me. But to this day they havent….
After they left I got back in to bed and started "rocking away" like I usually do and went back in to shut down mode and was also EXTRA EXHAUSTED from answering all their questions. This went on for 2 weeks, where I then managed to get out of bed and go to see my GP. I asked her if she had any knowledge of the crisis team coming to my home and she looked on her computer and said nothing was on there regarding what happened to me a few weeks ago. I was so upset and didnt understand why nothing had been sent to them as to me it was quite a serious thing and I assumed the crisis team would automatically send the report to my GP. Anyway I left the surgery in tears and called the Home team and asked them if my report had been sent to my GP where the person on the other end said "NO" But they will do it ASAP! I didnt have any words to add to that response so politely said thank you and put the phone down
A few weeks after that I muster up the strength to go back to my GP and she now has a copy of the report and sends an urgent email to Adult social services requesting they help me……
Anyway back to yesterday and the lady that came to see me from social services (P.s, please forgive me if my message sounds confusing or all over the place but I really am trying to best explain what im feeling about what has been going on)
Anyway she turns up with a "warm" smile on her face and sits her self down.
She then proceeds to ask me questions in regards to my illness but what I had done the previous night was got out all my medical letters from my GP and consultant which explain my illnesses and how they affect me. I did this because I already knew I was going to struggle to talk with explaining things so thought this would be helpful in communicating my problems to the needs assessment lady. (By the way I did also ask for an independent mental health care advocate to be allocated to me a good few weeks prior to the social worker coming to my home, for support and help with me to be able to communicate better with the assessment but was told that this was not going to be possible)
Anyway I start to show her the letters explaining my illness which are both physical health and mental health related. The Tourettes causes me to hit myself so im in constant physical pain, and the autism, tourettes, CPTSD and depression causes me to struggle with my mental health and communication.
She read the letters, and I also tried to explain verbally what was going on with me (mind you, things were coming out very fast and all over the place as I was feeling very emotionally overwhelmed which is part of my illness and my tourettes noises and tics were at there worst too)
Im not sure how she perceived me…
To cut a very long story short, she then proceeds to ask me If I live alone and I say yes, just me and my cat. She then asks can I get in the bath. I reply yes but I also tell her im not getting in the bath because im struggling to get motivated (MY GP letter confirmed this) The same with cooking. She also asked me if I do my own shopping and I told her I do most online. She also asked me about going out to which I told her that I am at home for 90% of the week, in bed rocking away, in physical and emotional pain hence me asking for help. She asks me what help I need but I keep telling her because of the autism im not able to ask for "what help I need" but know I need help hence me begging for help hoping someone would be able to tell me what help they feel I need. At this point I realised I was also probably oversharing with her with things related to my mental health and childhood trauma (another thing related to my illness) Im so annoyed with myself that I did this with her now but I didnt know how to hold those thoughts in and at the time thought it would be helpful for her to know these things. Ive never had an assessment like this before and thought I needed to be honest about everything….
Anyway, she then proceeds to end the assessment by saying she doesnt feel that they will be able to help me. She says she can clearly see that I need mental health help but they dont provide that sort of help. But what I find interesting is that she kept telling me that "you keep your home so nice" she didn't tell me this only once but she said it atleast 5 times. At that point I felt myself shutdown with her. I did ask her after she said it the first time what she ment by that and her response was "look at your strength, you can keep your home nice" I found that an odd statement and after she that all I kept thinking of in my head was "well if keeping a home clean and tidy" means one doesnt need help then why do millionaires with nice houses hurt themselves or struggle with there mental health…..
Anyway today is the day after and I feel very very deflated with everything that happened yesterday. Im still trying to process it all.
Im not even sure why I have wrote this message but for some reason after reading about how people high mask and me identifying with that I just felt to get my thoughts out on here,
So here I am, in my "clean and tidy" home, with my cat, rocking away in bed mostly, apart from when Im writing an email or going in to the kitchen or opening the door to the amazon driver and feel even more confused than I did before she came to do the assessment…
They say to ask for help when your struggling
Thats what ive been trying to do
But today im so annoyed with myself because it seems I cant seem to ask for the "help" I feel I need despite me knowing I need help….I say that because Im still not getting help
It will now take me a good few weeks to go back to my GP and the Lord only Himself knows how im going to try and "explain" to her what happened at my assessment….Im already dreading it
Also, for most of my life I have now realised that I was very good at masking hence how I just plodded along in life. But I cant mask anymore…….Havent been able too for the past few years…..
I just feel more confused as ever……confused with myself and everything around me…..Dont even know how I mustered up writing this message either
Thank you all for reading my musings ****
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Plenty of advice above, so I won't repeat. But definitely do an MR. My son went from 0 points to enhanced on both, so it's always worth doing.
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Again, really late coming back to this (I'm not that organised, sorry, LOL!) but I am glad that I was able to give you a bit more reassurance. It is not a pleasant process for anyone and it hits us particularly hard, mostly because hardly anyone in the process actually understands what autism is or how it really affects us. But it sounds like you and your husband went through the details really constructively and I hope that it has an impact at MR for you.
If you have to go to tribunal, don't let them make you believe you don't have rights. You do. And as I said before, most importantly, your wellbeing is the absolute priority.
@Kiki, I am so sorry you have gone through all of that. All through my assessment report, it mentions how I was calm or making eye contact or was smiling. I mean, smiling in a disability assessment? How is that not a red flag? I just don't understand how they're allowed to do so much with so little training, and yet then claim they observe equality and diversity and are qualified to judge :/
I wish you both so much better than what you've experienced so far. It does feel like we're on the front line taking the blows and the damage so that later autistic applicants and individuals will have a better time. But hang in there because you are not the only ones dealing with this rubbish, and you are not alone.1 -
Thank you for this suggestion. Ive just purchased it
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@Kiki23 oh lovely 🫂 I can’t even comprehend what you are going through. I don’t even know what to say because I’m struggling to make head not tsil of my own thoughts and managing with people who just don’t get it. I hope someone will be along very soon to advise and help xx
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