Published on 12, July, 2020
After 4 months of waiting for my paper-based assessment of my DLA to PIP claim to be completed, I received word of a reduction of entitlement for daily living and no mobility. This means I am not longer entitled to certain services.I have ASD, long-standing depression, severe chronic anxiety. All of my difficulties have been lifelong or I have suffered for most of my life. I have no friends due to social difficulties relating to understanding, anxiety and communication.I scored 2 points for mixing with people (prompting) but it is absurd to judge mere prompting is all I need. My therapist was even clear to the assessor that making me sit through a face to face assessment would be unhelpful due to the level of anxiety I suffer from. I still can’t even see my therapist without extreme anxiety. I also scored 0 for communication despite my difficulties in communicating my needs, thoughts and emotions relating to ASD and mutism. I only scored 4 points for mobility despite having limited ability to leave the house or parents car. I can lose awareness of my surroundings while outdoors too.It would seem the assessors have limited understanding of Autism. My therapist had to explain what it meant. I am not sure why they feel confident and qualified enough to agree on my needs without putting more weight on evidence I sent. I also scored no points for managing medication despite being a recognised self-harm risk.I sent my Autism diagnostic report which clarifies communication is part of the diagnosis. I wrote in detail how my condition effects me and provided other written reports. They didn’t seem to put much weight in any of it. Other than depression, I didn’t score much for my more complex needs.Due to a fear of being misunderstood, my answers were quite lengthy and I tried to give examples but it didn’t seem to help.I am exhausted with the whole process and I feel little hope that I can challenge the decision properly. I have limited support due to my difficulties engaging with others, so I don’t have any backup from the mental health team.
Unfortunately it seems like the only way to get this is through the help of an advocacy service or as Robert suggested, the citizens advice.bureau. They seem to know how to write these reports. Most people I have heard from seem to get the award after the appeal. It’s crazy to have to go through this and there is a lack of knowledge of how autism affects us but if we give in, they’re never going to know. I didn’t appeal but I’m applying again, with the support of a disability group, active independence. I don’t understand it, they made the rules and said that they would help disabled people but then it seems like one long hard fight. I don’t know why they don’t listen and why they can’t see that we struggle. It’s so hard. I feel like a child, all alone in a big scary harsh world that I don’t understand and the reasons I’m re-applying is because I need that help. Please get in touch with someone, no matter how hard it is. Can your therapist help you with this? I don’t even understand autism and I’m autistic. It doesn’t make sense to my brain but I know I wouldn’t be in the situation I’m in if I could just get on with life. Can you email the NAS and ask for advice/support? Don’t give in. I know it’s hard. It’s exhausting and soul destroying but you do matter, you’re a person, I hope you get some help with this.
Thank you for the support. I am sorry they denied your claim but it is good to hear you are claiming again with support.
I agree that ASD is hard to understand or make sense of! I really struggled to make sense of it and why I can't manage life like other people. It is lonely.
I feel the same - a child alone in a big scary harsh world. I just can't cope with the world and the demands of life, and people don't seem to understand this.
I'll see how I could get advice from CAB but seeing anyone just seems to be really difficult. I am paralysed with anxiety right now. I am scared for my future.
I know how you feel NAS35635 because that’s how I feel but any small step I make is a source of strength to me. I keep telling myself, if I don’t push myself forward now, through the fear, what’s it going to be like in another 6 months. I started taking medication yesterday. I didn’t want to and I’m terrified of taking it but I think I’m more terrified of what the future might hold if I don’t. The way I’m telling myself, is that if I can somehow get back on my feet and get a daily routine going with all the things I need, such as eating and exercising regularly etc then I can come off the meds. It’s very lonely and isolating but if we don’t speak out, nobody will help us and the more we speak out, the easier we make it for others. And truly, every little step I take, gives me strength amongst all the fear and anxiety so although contacting CAB or someone else might be feel like a huge mountain to climb, you will be rewarded with a sense of strength which will help you with the next step. I think it is a harsh world, we only have to look at how people treat each other but we will find our place, don’t give up on that.