I appreciate the sentiment and mean this entirely respectfully of the fact you’re complimenting me, but autism is literally my disability, not any sort of super power 😅
@@DanaAndersenI agree with you, as another Autistic person. Ableism is not good. Disabled people do not want to live to simply ‘inspire’ non-disabled people. Google ‘inspiration p*rn’.
I have autism and adhd. I was diagnosed aged 53. The pip system is cruel and everything is aimed towards blocking people from applying. There are also lots of cruel practices within the pip system. But the worse was the tribunal. I also had a panel who seemed like nice people and they were very scathing about the dwp. The dwp rep didn't even turn up. But the worse thing about it for me was being in a court like situation and being called an 'appellant'. I did feel like a criminal and I have never been in trouble in my life. Like a lot of autistic people I am a rules person. I like laws. I stick to them. Rules make me feel safe. But there I was in court being called an appellant because I needed to apply for financial assistance because I lived in total poverty. I did get it. But it really took its toll on my mental health. The guilt thing you talk about is I believe how the this government have demonised disabled people in this country. Pip demonise disabled people too. Its not surprising we all come through that system feeling confused and shook up and like we don't deserve to have assistance for difficulties and disabilities and long term sickness.
I’m so sorry that’s been your experience, especially that the DWP rep didn’t even show up, but thank you for sharing it here! I really do think the whole process is done in a way that’s supposed to dissuade us at each step, but it’s silly when like you say, it had such an effect on my mental health I was probably even more in need of it afterwards than I was before!
Some of them aren't qualified enough to be giving you any kind of final decision that's why you can always appeal it and refuse to speak with anyone who are just simply their to ruin your life, ask to speak with professionals only
Dana, i have high functioning autism, depression and type 2 diabetes. I'm on 1 0 tablets a day . Unfortunately, they rejected my pip (1st application of this claim) can the autistic society fill in the mandatory reconsideration for me or can only citizens advice bureau do it?
My daughter as adhd , autism, anxiety, she self harms . She’s now 16 so moving from dla to pip , she had a telephone assessment the other day . It was dreadful, questions asked didn’t seem relavent to get condition , she was also rushed to answer questions and her answers was twisted . She’s still at school and finds just talking to people extremely difficult . It was utterly awful.
Thank you. My daughter is 22 and has high-level functioning autism. She is more like a child really. She can do everything for herself physically but is not able to deal with the world. I am her representative. I am now in the process of appealing the PIPs decision. I am looking forward to the tribunal - seeing people face to face. Just because she is able to take herself to the loo, cook her own food or run, does not mean that she is capable to be an independent person. I wish nothing more than for her to be free, It makes me sad and guilty to see her struggle so much and to see her so alone, unable to go out and unable to have friends. She would not be able to talk as you have done so well. Thank you xxx
Thank you SO MUCH for this video!! I'm going through the dreaded application at the moment and almost giving up, as it's making me feel so vulnerable & anxious. It desperately needs to be made more accessible and less shame/stress inducing. Thank you for making all these points, it is so helpful.
I’m sorry you’re having to go through it, but best of luck!! It’s so tough to get through, I’m sure they want us to just give up, but you’re not alone in it!
Hi Dana Scully! applying for pip is a nightmare. I'm autistic and have the common mental illnesses which tend to go with that (depression, anxiety) and i'm in the process of trying to get pip. I can work a bit but a full time job is burnout territory. So my thinking is I get pip so that i can supplement the income of a part time job and hopefully live independently one day soon. The system is so unreasonably difficult and stressful for just about everyone who applies. Thank you for talking about your experience. Your takeaway example is great and is definitely something i struggle with too, on those days where even going to the toilet is struggle a takeaway provides the food you need without having to exert energy you just don't have. Having that little bit extra money to help with daily struggles takes some of the guilt and stress away. Happy you received pip and best wishes for everyone in the comments!
I'm trying to get an Autism spectrum diagnosis now as an adult and hopefully eventually get on PIP too. I've tried for years to just work through my problems but just decided I can't ignore it any longer. When you can't hold down a job and people are constantly telling you how weird you are as well as the fact you struggle to do things that come so easily to most people you pretty much just have to accept it's not something you can just will power your way through. The problem with Autistic people when trying to get help is many of them appear to be completely normal until you've known them a while and can witness the things they struggle with.
Hey, I appreciated this video. I'm anxious about applying for PIP and was declined with 0 points on my previous try. But this time I have the support of a local Disability Action organisation, and I'd really recommend this step to others who are applying. It really helps to have someone sitting there with you doing the application and being encouraging. In contrast to what you say in the video about 11 minutes in, I believe lots of autistic people are eligible for the Mobility component of PIP. It's not just for people with physical disabilities and wheelchair users. The mobility component includes difficulty planning and following journeys, which I and almost all the autistic people I know have trouble with. It definitely takes a lot of us at least twice as long and twice as much effort to undertake journeys. Statistics about faked benefit claims are greatly exaggerated and subject to a lot of newspaper fearmongering. Benefit caps were introduced as a reaction to this.
I'm in the process of learning about my autism, if it wasn't for a friend pointing it out to me because he learned about autism due to his sons diagnostic, I wouldn't have known. its inspiring to hear other people with autism speak up about the difficulties we face every day. Thanks for speaking up, a lot of us mask or avoid the truth because its embarrassing, I personally have gaps in social situations and try to compensate with my special interests that not everyone is interested in. I'm 37 and have only just learned about autism and its explained a lot about my past. thanks for sharing
PIP = Personal Persecution Payment! I dread the assessments even before the review form arrives as the last couple of times I have lost it completely and have no money to live on which is terrifying as I have two cats. Currently I have my parents to help when I loose the money but they are on a pension and when they aren't here I have no-one else to help. I've had to get food parcels in the past but I cant eat solid most of the time so most of the box is wasted and its actually cat food I need! It really worries me that this could happen everytime I apply in the future. Don't know that its worth fighting to survive everyday to end up with that shit time and time again
Thanks for this. I have ADHD and wasn't sure whether I should apply. Even just the food part of it...I've burnt so much, ruined pans, set fire to stuff, burnt myself cos I forget that you can't get stuff out the oven with bare hands, cut myself badly... but now I rarely prepare any food at all. Even microwave meals are too much to think about most of the time. So thanks... I think I will give it a go now.
Oh gosh, getting stuff out the oven with bare hands because I just forgot I can't do that without getting hurt is an experience I've had a few too many times! Best of luck if you choose to go for it!
I have diagnoses of dyspraxia, ADHD and ASD traits . I applied for PIP , I got 0 points. I had a nervous breakdown. Based on my situation, I could get it. I got a degree aged 20, 1999, postgraduate qualification 2000. I am a landlord. I get £535.20 ( £6400 / year ), £4600 / year . I can’t get benefits. There is no support.
Bless you. Thank you so much for sharing. My son has autism. I'm half way through doing his first claim for him. He's not able to do it himself. It's so hard to fill out. Made me cry because I relate so much to what your talking about. So glad you succeeded
YEY 😁 I was like an excited kid when I saw this video was up 🤩 and even moreso when you said "Someone reccomend this..." and I was like "EeeEEEek that someone was mee!" 😁🤣 Thank you so much for this 🙏 I've strongly reccomended this video, and your channel, to a large support group for autistic women and non-binary members so I really hope your content reaches more people and helps them as much as it helps me 🙂 Once again this video was seriously relatable 🤯 Whilst I'm sorry your experience applying and finally getting PIP was so difficult, I'm stoked for you that you recieve it and that it helps you 🥰 You're in such a similar boat to me, all the same issues with travelling etc and the inability to work (at least right now), I always feel full of shame and like a failure of an adult too but we shouldn't, we have an "invisible" disability 🙈🤷🏻♀️ It's lifelong and it's not our fault 🙂 I fully related to your paranoia of the government seeing your video and it being an issue cause I'd be exactly the same 😂 But as you say, they're pretty busy I think you're good 😎 It is an insanely dehumanising and degrading process, the questions in the huge "How your disability affects you" booklet made me hate myself. I do think they initially reject everyone too, or at least most, which is a really cruel tactic because of how hard they make it for disabled people to be heard. Like we're not used to a lifetime of that 🙄 Then there's the score of zero points!? Gaslighting at it's finest 😅 It's really helpful to know that not only do they make you go through the exact same application process each time your claim time is up, but that you can't reapply until it ends. That's awful, and again probably a tactic to make people who struggle with the whole process give up. Continued support should be a must for people who are born with a disability, and therefore have to live with a disability. Nobody shines a single light on the difficulties of "Lower support needs" autistic adults full stop, but especially those that're working class and unable to work. So your videos are a huge help and a massive step in the right direction for us low/lower support needs autistic people! I'm pretty certain I'll enjoy all the video topics you're unsure about posting too (hint hint 😏😂) and you always have my support, Dana 😁 Hope today's been a good one for you! 😊
Glad I am not the only one who took months literally just to do the ring ding part, ADHD but primarily my autism just hates it. I know this video might be showing it's age by now but still thank you.
You've put me off, lol. Sounds like struggling is easier than facing all that. You sound just like me, i never knew i was autistic and even after diagnosis, people still claim I'm fine when I'm clearly struggling, all because I'm not in a wheelchair etc. Well done for facing fears and getting shit done, thank you for your video. Not many people can understand how hard it is to pick up a phone or answer a door, i do though, it's been nice listening to someone like me, in an odd way.
i had a nice pip assessor who understood me and I’m grateful when i went to the meeting. But the paperwork was horrible. My mum and me spent ages filling it out
My daughters just turned 16, autistic and anxiety, and receives high rate care, low rate mobility right now, and I’m having to do her PIP claim. The thought of ending up with nothing is terrifying. Especially as she’s still in full time education and can’t work even if she was able to. The whole process for someone so young is sickening
I’m so sorry you and your daughter are having to deal with it, the system really needs a reform, it’s handling of cases is far too generic and doesn’t take individuals like your daughter into account correctly at all.
@@DanaAndersen I really think 16 is too young to switch too, I mean if kids are meant to stay in some form of education now until 18, then the age for adult benefits should’ve changed alongside it. She doesn’t even have a bank account let alone bills to manage, she’s living at home, it’s just really not set up to assess children
My 16 year old son is also autistic. He was diagnosed when he was 4 and had been receiving middle rate care from dla. My son never received anything for mobility. I did my son's pip claim a few months ago as he turned 16 April of this year, still in full time education and recently my son was awarded the enhanced rate care and enhanced rate mobility. My son didn't need an assessment over the phone or in person. I just sent all his paper work from schools, Healthcare professionals specialist, SEN report, Healthcare plan plus answered all the questions regarding my son difficulties in his daily life. I'm so thankful it worked out for my son because it was stressful for us thinking he may not receive anything.
@@TheSupermum100 so glad! It went well for my daughter too, enhanced for both, didn’t need an in person assessment, I just had a brief call from the assessor who just wanted to know if there had been any changes. All very straight forward and a lot easier than DLA
Excellent video. You very much said everything I feel and have experienced. Undiagnosed until this summer, aged 47!!!! Missed and missed, misdiagnosed again and again. Its been a bit like living a half life. Anyway, thanks for this video. I have now subscribed.
Second Thought has a good video on why the process of means testing (testing whether people need disability benefits) costs more money than it saves weeding out the people who don't need it.
Hmm sounds really distressing... Here in Germany i get 502€ (around 436£) Benefits + the cost of my apartment. Thats just the regular benefit-program every one gets who is unemployed. We have no extra money for disabled people :/ If they tell me to apply to some job and i dont do it, they only give me 70% of the 502€ (350€) for 3 months as a penalty. I told them i just cant work at the moment but they say i have to get a job
First off. I live in the US. So this doesn't quite exist but we do have something diffrent I'm working on for government assistance. The begining of your video you talk about doing the paperwork and how it reminds you or makes you feel like how you can't exist as a normal adult and you feel less for it. Thats exactly how I feel for my 5 year old son after trying to set him up in school to be tested for Autism. He is Autistic and im always reminded of how diffrent he is and how hard it is. Thats being said. I DONT GIVE A DAMN! he's awesome, my best friend, and my whole damn world. Thank you for this video and good luck with everything your going through. Your awsome!!
Now going to upper tribunal after having no representation and was toldI initially my score was 12 points or more but was only awarded 4 points. Lesson learnt always get a friend or some representation at a tribunal. I felt walked over and ignored and half of my points were just written off by an uncaring panel. Absolutely disgusted
You should automatically get sent renuwal forms around 6months before your claim ends so your claim doesnt stop.at the moment they are being sent 1 year ahead.x
Great video, really informative. I always felt confused about how to apply for PIP payments. I have ADHD Combined, Dyspraxia, Auditory Processing Disorder plus mild learning difficulties.
Glad I'm not the only one with a phone problem. I think that's a major reason I can't get PIP, I just want the call to end but it seems to go on forever. If I mention a problem I get interrogated about it so it's easier to say "no problem" and the call with end sooner.
I got diagnosed as an adult and didn’t even know I was eligible for Pip until my psychiatrist recommended it. I liked the part when you said all the ways we can’t exist as an adult lol. My phone interview is with a supposed health professional yet i’m still extremely nervous, sometimes it feels like saying how nervous things make me isn’t believable because i’m quite expressionless but i’m hoping they are understanding rather than discriminating towards me. Thanks for the video
That lawyer at the tribunal. Court costs, other staff admin. Cost a fortune rather than just pay you the money Iv just been diagnosed. My autism counsellor suggested I go for it. Sounded not to bad but reading and watching your vid and others sounds like a nightmare. We were on phone for ages they answered at 10 to 5 only to say they didnt have time to take details as they were going home.
It's definitely not an easy process, but I'm of the opinion that it's worth doing for something you're entitled to and that can really help make a difference in your life. It sounds like you've already experienced your first play around from the straight off the bat, so I hope if you go ahead with it the process is easier and less hindered by people wanting to go home!
I had my autism assessment last year. The whole crap surrounding PIP is the major reason why I haven't bothered applying for it because it could take up to a year to get it. In the meantime I would have no money so how the flip am I meant to pay for my rent or council tax on zero money(I assume housing benefit and council tax reduction benefit stops during the claim?). The whole thing I am certain of is designed to put people off from claiming as a cost cutting exercise. I would think to think it will be better under Labour but somehow I doubt it since it was Labour that bought in the whole assessment crap in the first place(before assessments all you needed was a doctor's letter).
PIP doesn’t affect any other benefit! You can claim house benefit, UC, just about anything while also applying for or claiming PIP. That’s one of the few good decisions they’ve made for it
I'm watching this as I'm applying for pip a 2nd time and I tell ya they gave my grandad midum level they said he walked around when he can't walk and more! it's a broken system but u gotta fight take them to court I will and this time I want my interactions with them recorded as evidence after they lied to me and they even turned my mate down who is in a wheel chair and took it of my sisters mate who is on the strongest meds u can have its a broken system and which I'm taking up with my local mp
hi i find it hard to be normal person as iam not far from you by listening to your video was really helpful as i also a suffer from autism i wish i knew from the start the trouble to get pip with no help or people behind me which my case is closed but iam going through the process to the upper tribunal my memory tends to be off and also brain fog
It is like watching a twenty years younger me talking :D (I was refused WaJong 13 years ago which is something like PIP in NL, though you need to prove that you were sick before your 18th birthday, which I couldn't then, I had been diagnosed with depression, anxiety and PTSD, but with my new diagnosis of autism I probably would have gotten approved for it back then, but yeah it's too late now, have been on regular benefits for 15 years)
I ain't going to bother try apply with my recent late-diagnosed autism, June 2023. Trying to get 'Access to Work' support after a declined PIP application years ago, was bad enough.
Can you make a video of your experience with universal credit if you have any? I work for them and want to know beyond my training how people with vulnerabilities actually feel when I call them. Or would it be better if I don't call them and send them a message of what I need 🤔 I've just started this job and I've been sending messages asking the people if they want a call or if they want me to just send them messages.😅 also I subscribed ☺️
I applied in 2021, got refused and never appealed. I guess that's what they want, people to give up. On the other hand I applied for DLA for my 5 year old son and I really made sure I did everything to get it for him.
They take millions from us in taxes and national insurance so it's outrageous these comments from people saying pip is inaccessible. It's likely Tories doing
Similar to me,,, was apparently diagnosed with autism and asbergers traits,,, legal rep did not come to tribunal So i was alone,, and decided 3 points daily living and 0 mobility,, just don't know what to do as i live alone with uc and limited capability without any element, struggle to get work also
Thank you for video! Very detailed and explained well and I'm glad you eventually got it. I'm applying again soon and have a public lawyer that helped my friend get it too and he has Autism. I've only really got friends with Autism, at least ones that I'll see in real life 😂 and pretty much all of them get PIP. I have Autism, Epilepsy, Quarter Blindness, Depression, Anxiety and they rejected my claim. My mum pretty much did majority of the talking to PIP Assessor as I'm really bad at explaining and remembering everything I should say and I'm also bad at making eye contact and feel really uncomfortable doing so. Sad thing is the Assessor said I was great at talking and perfect eye contact... It made me feel sick to my stomach that people working for PIP must be paid to completely lie. Even with my mum there they still lied, hate to think what they would have made up if my mum wasn't there 🙄 I got Epilepsy and Quarter blindness from a discovered rare Brain AVM a few years ago that caused a blood clot size of a golf ball and was lucky enough to get surgery to remove it and the Brain AVM. The sad thing is my mum paid £30 to our doctor to write a supporting letter to PIP to help the claim and doctor wrote my mum telling them the symptoms of my Epilepsy was vague. Which basically hit my claim massively. Luckily Neurologist wrote to the Doctor saying they offiically diagnosed me with Epilepsy and that my mum wasn't vague at all and was very clear symptoms of Simple Seizures (Focal Seizures) i have. Its also pretty much guaranteed to have Epilepsy with what happened to me and doctor didn't even write anything like that, almost said I didn't have it. Glad the Neurologist put her in her place at least but unfortunately it was too late since 1st claim was over. Applying for 2nd time now and hopefully it will go a lot more smoothly, have a lot more support from Lawyer and Neurologists diagnosas and letter he sent now so it should hopefully. Glad I watched your video to give me a better idea of what to do if it has to go to Mandatory Reconsideration. Thank you! 😊 Ps you're very pretty!!
I did originally get it while only diagnosed with anxiety and depression so depending on what you’re able to prove to them you may be able to. Having already had a screening should be able to back you up somewhat, but they’re not particularly understanding or forgiving if you can’t show evidence of what you’re telling them!
Have you done UC working assessment ?if yes please record how it went and how you answered your questions I m so nervous they trick me with questions. I have undiagnosed ADHD waiting for asssesment and I have some autism traits too. But I do t have medical evidence yet
I have, but it went terribly and I think sharing my experience would just make a lot of people more anxious without actually providing anything helpful 😅
I had my phone appointment yesterday and honestly oof... I'm sat there laying everything I can't do out and it just feels like wow, aren't I a basket case lmao
*18-MONTHS?!* That should be a crime. And no, you were RIGHT to tell them why they were wrong on each (bs) point that they made. It was proabably what got you your payment in the end. Luckily you are good enough with communication to get your thoughts across, image all those that aren't. Have you ever considered writing a book on your experiences with the system as an Autistic person? You clearly have enough subjects to talk about.
Great video! I'm lucky enough to be able to work, but I completely empathize with the difficulties going through the process. I've been struggling with getting an appointment with a psychiatrist for a month now so I can adjust my anxiety meds. The doctor my gp referred me to cancelled on me and never called to reschedule. And I finally managed to call another place on Monday but it went straight to voicemail and I panicked. I then called again prepared to leave a voice message this time and haven't heard back so that's fun. Can you make a video on selective mutism? I think I might experience it sometimes but I'm not sure. I don't have a good grasp on what exactly it is and what it should feel like. Most info is on what it looks like from the outside.
Late last year the DWP announced that it will introduce a scheme to help people applying for PIP who find the process difficult. It covers people with different conditions including Autism. Sometimes a claimant will have someone to help them apply which could include help with filling in forms (Personal Acting Body, PAB) if the claimant does not have one then the DWP will provide someone to help. Will this be a DWP employee? Let’s hope this will improve the situation. The whole process can be complex and stressful. As well when will this start and how would one apply? Would it help someone’s confidence if there is a properly trained helper from the DWP itself? As well let’s hope it helps a vulnerable person feel legitimate in making a claim.
I first got it in 2013 when pip was first introduced, i was told i should never be taken off the award, my mum claimed it for me at the time, i was receiving it for 8 years no problem, until COVID times when the government started money grabbing, they took it off me, i re applied they gave me 0 points, i took it to court they paid me over 5k back and gave me my pip back then this February they took it away from me again for no reason, i am currently squatting as i was supposed to move out my property but i literally can't afford to, i literally just got my letter telling me that i aint eligible, im going straight to the court again theyre gonna have to backpay me again, absolute idiots and they say the government is supposed help People
I should have applied years ago when I had a social worker and an autism care worker. Budget cuts i see no one now. All the evidence i have is a 10 year old nhs letter saying i have aspergers. 😐
After being diagnosed with Autism recently I had my face to face meeting 2 weeks ago and so just awaiting the outcome with regards to being awarded Standard or Enhanced, or zero 🤔...
i think if your diagnosed with autism or adhd and have the paper work to prove.... how are we faking it ..ive just been diagnosed with autism..i am struggling with life but somebody else has to check me out again to get bit of extra cash is just not fair ... i am 38 never owned house or flat .. i last went on holiday when i was 18 years old just stuck in the same every day loop hole shit has everything has got worst
Had my tribunal today and the monsters denied me what I absolutely believe I am entitled to having. They simply just don't get it. Because I can dress well and had a job of something for 7 straight years seems to mean I am normal. There is nothing normal about my life at all. I have literally had no friend all my life or anything. I can't even get a passport because I don't know anyone. This whole system is totally corrupt. I genuinely believe because I was on my own without a representative that the panel sided with DWP. They couldn't even have the guts to tell their decision to the face. The decision was confirmed though within half hour of me leaving the building because I checked the online tribunal portal. Absolutely vile system! I dont mean to sound jealous or anything like that. I'm just annoyed. I could literally just totally give up and not even try to push harder I suppose. My condition has got even worse in recent years but they just don't listen. The system literally doesn't make sense. It's not like PIP is permanent. If I got better they could easily take it off me for example. The whole thing is wrong.
My daughter and my bro are autistic but they got their pip on first try. I’m just starting my own claim with autism send anxiety but I know I won’t it on the first try lol
It seems everyone has Autism these days. Utterly shameful that this benefit is being abused in this way. It was meant to go to genuine people who are born with severe disabilities or someone who contracts an illness that renders them disabled. Not for made up nonsense like ADHD Autism and Anxiety.
Are you like 95? What is wrong with you? They are scientifically proven to exist. Autism, for example, is due to an underdeveloped frontal cortex in the brain. Educate yourself before making ridiculous, uninformed, ignorant and downright stupid comments like this.
@@BloodMoonASMRget a grip... Autism is a scam!!! You get 750 quid a month because 'of my anxiety', and poor people who have had a stroke are lucky to get a penny. No you tell me what's a disability. I'm glad they are over hauling pip. You lot will have to work then. Lazy sods lol.
The way you articulate your words and explain your situation is inspiring. Well done. Your autism is your super power.
I appreciate the sentiment and mean this entirely respectfully of the fact you’re complimenting me, but autism is literally my disability, not any sort of super power 😅
@@DanaAndersenI agree with you, as another Autistic person. Ableism is not good. Disabled people do not want to live to simply ‘inspire’ non-disabled people. Google ‘inspiration p*rn’.
I have autism and adhd. I was diagnosed aged 53. The pip system is cruel and everything is aimed towards blocking people from applying. There are also lots of cruel practices within the pip system. But the worse was the tribunal. I also had a panel who seemed like nice people and they were very scathing about the dwp. The dwp rep didn't even turn up. But the worse thing about it for me was being in a court like situation and being called an 'appellant'. I did feel like a criminal and I have never been in trouble in my life. Like a lot of autistic people I am a rules person. I like laws. I stick to them. Rules make me feel safe. But there I was in court being called an appellant because I needed to apply for financial assistance because I lived in total poverty.
I did get it. But it really took its toll on my mental health. The guilt thing you talk about is I believe how the this government have demonised disabled people in this country. Pip demonise disabled people too. Its not surprising we all come through that system feeling confused and shook up and like we don't deserve to have assistance for difficulties and disabilities and long term sickness.
I’m so sorry that’s been your experience, especially that the DWP rep didn’t even show up, but thank you for sharing it here!
I really do think the whole process is done in a way that’s supposed to dissuade us at each step, but it’s silly when like you say, it had such an effect on my mental health I was probably even more in need of it afterwards than I was before!
Some of them aren't qualified enough to be giving you any kind of final decision that's why you can always appeal it and refuse to speak with anyone who are just simply their to ruin your life, ask to speak with professionals only
Dana, i have high functioning autism, depression and type 2 diabetes. I'm on 1 0 tablets a day . Unfortunately, they rejected my pip (1st application of this claim) can the autistic society fill in the mandatory reconsideration for me or can only citizens advice bureau do it?
This is why many individuals with disabilities don't apply for PIP. They feel ashamed & intimidated by the assessment process.
Can I get pip, I’m diagnosed autistic and adhd, and it’s effecting me big time! I do have a good job on paper earn 50k
My daughter as adhd , autism, anxiety, she self harms . She’s now 16 so moving from dla to pip , she had a telephone assessment the other day . It was dreadful, questions asked didn’t seem relavent to get condition , she was also rushed to answer questions and her answers was twisted . She’s still at school and finds just talking to people extremely difficult . It was utterly awful.
Thank you. My daughter is 22 and has high-level functioning autism. She is more like a child really. She can do everything for herself physically but is not able to deal with the world. I am her representative. I am now in the process of appealing the PIPs decision. I am looking forward to the tribunal - seeing people face to face.
Just because she is able to take herself to the loo, cook her own food or run, does not mean that she is capable to be an independent person.
I wish nothing more than for her to be free, It makes me sad and guilty to see her struggle so much and to see her so alone, unable to go out and unable to have friends.
She would not be able to talk as you have done so well. Thank you xxx
Thank you SO MUCH for this video!! I'm going through the dreaded application at the moment and almost giving up, as it's making me feel so vulnerable & anxious. It desperately needs to be made more accessible and less shame/stress inducing. Thank you for making all these points, it is so helpful.
I’m sorry you’re having to go through it, but best of luck!! It’s so tough to get through, I’m sure they want us to just give up, but you’re not alone in it!
Hi Dana Scully! applying for pip is a nightmare. I'm autistic and have the common mental illnesses which tend to go with that (depression, anxiety) and i'm in the process of trying to get pip. I can work a bit but a full time job is burnout territory. So my thinking is I get pip so that i can supplement the income of a part time job and hopefully live independently one day soon.
The system is so unreasonably difficult and stressful for just about everyone who applies. Thank you for talking about your experience. Your takeaway example is great and is definitely something i struggle with too, on those days where even going to the toilet is struggle a takeaway provides the food you need without having to exert energy you just don't have. Having that little bit extra money to help with daily struggles takes some of the guilt and stress away.
Happy you received pip and best wishes for everyone in the comments!
But they love taking our Tax and National insurance and then go and give it to Ukraine or Asylum seekers.
I'm trying to get an Autism spectrum diagnosis now as an adult and hopefully eventually get on PIP too. I've tried for years to just work through my problems but just decided I can't ignore it any longer. When you can't hold down a job and people are constantly telling you how weird you are as well as the fact you struggle to do things that come so easily to most people you pretty much just have to accept it's not something you can just will power your way through. The problem with Autistic people when trying to get help is many of them appear to be completely normal until you've known them a while and can witness the things they struggle with.
Exactly, having spent most of our lives masking (pretending to be "normal"), then all of a sudden we have to prove all of the things we struggle with.
Hey, I appreciated this video. I'm anxious about applying for PIP and was declined with 0 points on my previous try. But this time I have the support of a local Disability Action organisation, and I'd really recommend this step to others who are applying. It really helps to have someone sitting there with you doing the application and being encouraging.
In contrast to what you say in the video about 11 minutes in, I believe lots of autistic people are eligible for the Mobility component of PIP. It's not just for people with physical disabilities and wheelchair users.
The mobility component includes difficulty planning and following journeys, which I and almost all the autistic people I know have trouble with. It definitely takes a lot of us at least twice as long and twice as much effort to undertake journeys.
Statistics about faked benefit claims are greatly exaggerated and subject to a lot of newspaper fearmongering. Benefit caps were introduced as a reaction to this.
I'm in the process of learning about my autism, if it wasn't for a friend pointing it out to me because he learned about autism due to his sons diagnostic, I wouldn't have known. its inspiring to hear other people with autism speak up about the difficulties we face every day. Thanks for speaking up, a lot of us mask or avoid the truth because its embarrassing, I personally have gaps in social situations and try to compensate with my special interests that not everyone is interested in. I'm 37 and have only just learned about autism and its explained a lot about my past. thanks for sharing
PIP = Personal Persecution Payment! I dread the assessments even before the review form arrives as the last couple of times I have lost it completely and have no money to live on which is terrifying as I have two cats. Currently I have my parents to help when I loose the money but they are on a pension and when they aren't here I have no-one else to help. I've had to get food parcels in the past but I cant eat solid most of the time so most of the box is wasted and its actually cat food I need! It really worries me that this could happen everytime I apply in the future. Don't know that its worth fighting to survive everyday to end up with that shit time and time again
Thanks for this. I have ADHD and wasn't sure whether I should apply. Even just the food part of it...I've burnt so much, ruined pans, set fire to stuff, burnt myself cos I forget that you can't get stuff out the oven with bare hands, cut myself badly... but now I rarely prepare any food at all. Even microwave meals are too much to think about most of the time. So thanks... I think I will give it a go now.
Oh gosh, getting stuff out the oven with bare hands because I just forgot I can't do that without getting hurt is an experience I've had a few too many times! Best of luck if you choose to go for it!
I have diagnoses of dyspraxia, ADHD and ASD traits . I applied for PIP , I got 0 points. I had a nervous breakdown. Based on my situation, I could get it.
I got a degree aged 20, 1999, postgraduate qualification 2000. I am a landlord. I get £535.20 ( £6400 / year ), £4600 / year . I can’t get benefits. There is no support.
@@ALADDIN22091978 guess i won't bother in that case lol
You should definitely apply for PIP and fight them every step of the way till you get what you're entitled to.
Bless you. Thank you so much for sharing. My son has autism. I'm half way through doing his first claim for him. He's not able to do it himself. It's so hard to fill out. Made me cry because I relate so much to what your talking about. So glad you succeeded
I hope it goes smoothly for you and your son, and I'm sorry the process is the way it is, we all deserve much better!
How did you get on with the PIP claim?
I'm starting a claim for my 16yr old autistic son
YEY 😁 I was like an excited kid when I saw this video was up 🤩 and even moreso when you said "Someone reccomend this..." and I was like "EeeEEEek that someone was mee!" 😁🤣 Thank you so much for this 🙏
I've strongly reccomended this video, and your channel, to a large support group for autistic women and non-binary members so I really hope your content reaches more people and helps them as much as it helps me 🙂
Once again this video was seriously relatable 🤯 Whilst I'm sorry your experience applying and finally getting PIP was so difficult, I'm stoked for you that you recieve it and that it helps you 🥰
You're in such a similar boat to me, all the same issues with travelling etc and the inability to work (at least right now), I always feel full of shame and like a failure of an adult too but we shouldn't, we have an "invisible" disability 🙈🤷🏻♀️ It's lifelong and it's not our fault 🙂
I fully related to your paranoia of the government seeing your video and it being an issue cause I'd be exactly the same 😂 But as you say, they're pretty busy I think you're good 😎
It is an insanely dehumanising and degrading process, the questions in the huge "How your disability affects you" booklet made me hate myself. I do think they initially reject everyone too, or at least most, which is a really cruel tactic because of how hard they make it for disabled people to be heard. Like we're not used to a lifetime of that 🙄 Then there's the score of zero points!? Gaslighting at it's finest 😅
It's really helpful to know that not only do they make you go through the exact same application process each time your claim time is up, but that you can't reapply until it ends. That's awful, and again probably a tactic to make people who struggle with the whole process give up. Continued support should be a must for people who are born with a disability, and therefore have to live with a disability.
Nobody shines a single light on the difficulties of "Lower support needs" autistic adults full stop, but especially those that're working class and unable to work. So your videos are a huge help and a massive step in the right direction for us low/lower support needs autistic people!
I'm pretty certain I'll enjoy all the video topics you're unsure about posting too (hint hint 😏😂) and you always have my support, Dana 😁 Hope today's been a good one for you! 😊
Glad I am not the only one who took months literally just to do the ring ding part, ADHD but primarily my autism just hates it. I know this video might be showing it's age by now but still thank you.
You've put me off, lol. Sounds like struggling is easier than facing all that. You sound just like me, i never knew i was autistic and even after diagnosis, people still claim I'm fine when I'm clearly struggling, all because I'm not in a wheelchair etc. Well done for facing fears and getting shit done, thank you for your video. Not many people can understand how hard it is to pick up a phone or answer a door, i do though, it's been nice listening to someone like me, in an odd way.
i had a nice pip assessor who understood me and I’m grateful when i went to the meeting. But the paperwork was horrible. My mum and me spent ages filling it out
I recently got diagnosed with autism but im hearing even more to relate too from you❤
My daughters just turned 16, autistic and anxiety, and receives high rate care, low rate mobility right now, and I’m having to do her PIP claim. The thought of ending up with nothing is terrifying. Especially as she’s still in full time education and can’t work even if she was able to.
The whole process for someone so young is sickening
I’m so sorry you and your daughter are having to deal with it, the system really needs a reform, it’s handling of cases is far too generic and doesn’t take individuals like your daughter into account correctly at all.
@@DanaAndersen I really think 16 is too young to switch too, I mean if kids are meant to stay in some form of education now until 18, then the age for adult benefits should’ve changed alongside it.
She doesn’t even have a bank account let alone bills to manage, she’s living at home, it’s just really not set up to assess children
My 16 year old son is also autistic. He was diagnosed when he was 4 and had been receiving middle rate care from dla. My son never received anything for mobility. I did my son's pip claim a few months ago as he turned 16 April of this year, still in full time education and recently my son was awarded the enhanced rate care and enhanced rate mobility. My son didn't need an assessment over the phone or in person. I just sent all his paper work from schools, Healthcare professionals specialist, SEN report, Healthcare plan plus answered all the questions regarding my son difficulties in his daily life. I'm so thankful it worked out for my son because it was stressful for us thinking he may not receive anything.
@@TheSupermum100 so glad! It went well for my daughter too, enhanced for both, didn’t need an in person assessment, I just had a brief call from the assessor who just wanted to know if there had been any changes. All very straight forward and a lot easier than DLA
@@incognaytopotayto I'm glad it worked out for you both also 😊.
Dana you are superb. My son is autistic too. Well done for this video it is very special. Thank you.
Excellent video. You very much said everything I feel and have experienced. Undiagnosed until this summer, aged 47!!!! Missed and missed, misdiagnosed again and again. Its been a bit like living a half life. Anyway, thanks for this video. I have now subscribed.
Second Thought has a good video on why the process of means testing (testing whether people need disability benefits) costs more money than it saves weeding out the people who don't need it.
Hmm sounds really distressing... Here in Germany i get 502€ (around 436£)
Benefits + the cost of my apartment. Thats just the regular benefit-program every one gets who is unemployed. We have no extra money for disabled people :/ If they tell me to apply to some job and i dont do it, they only give me 70% of the 502€ (350€) for 3 months as a penalty. I told them i just cant work at the moment but they say i have to get a job
First off. I live in the US. So this doesn't quite exist but we do have something diffrent I'm working on for government assistance.
The begining of your video you talk about doing the paperwork and how it reminds you or makes you feel like how you can't exist as a normal adult and you feel less for it. Thats exactly how I feel for my 5 year old son after trying to set him up in school to be tested for Autism. He is Autistic and im always reminded of how diffrent he is and how hard it is. Thats being said. I DONT GIVE A DAMN! he's awesome, my best friend, and my whole damn world. Thank you for this video and good luck with everything your going through. Your awsome!!
Thank you so much 🙏🏻 more content please.
Now going to upper tribunal after having no representation and was toldI initially my score was 12 points or more but was only awarded 4 points. Lesson learnt always get a friend or some representation at a tribunal. I felt walked over and ignored and half of my points were just written off by an uncaring panel. Absolutely disgusted
You should automatically get sent renuwal forms around 6months before your claim ends so your claim doesnt stop.at the moment they are being sent 1 year ahead.x
Great video, really informative. I always felt confused about how to apply for PIP payments. I have ADHD Combined, Dyspraxia, Auditory Processing Disorder plus mild learning difficulties.
Glad I'm not the only one with a phone problem. I think that's a major reason I can't get PIP, I just want the call to end but it seems to go on forever. If I mention a problem I get interrogated about it so it's easier to say "no problem" and the call with end sooner.
I got diagnosed as an adult and didn’t even know I was eligible for Pip until my psychiatrist recommended it.
I liked the part when you said all the ways we can’t exist as an adult lol.
My phone interview is with a supposed health professional yet i’m still extremely nervous, sometimes it feels like saying how nervous things make me isn’t believable because i’m quite expressionless but i’m hoping they are understanding rather than discriminating towards me.
Thanks for the video
how did it go?
That lawyer at the tribunal. Court costs, other staff admin. Cost a fortune rather than just pay you the money
Iv just been diagnosed. My autism counsellor suggested I go for it. Sounded not to bad but reading and watching your vid and others sounds like a nightmare. We were on phone for ages they answered at 10 to 5 only to say they didnt have time to take details as they were going home.
It's definitely not an easy process, but I'm of the opinion that it's worth doing for something you're entitled to and that can really help make a difference in your life. It sounds like you've already experienced your first play around from the straight off the bat, so I hope if you go ahead with it the process is easier and less hindered by people wanting to go home!
i really hoped this would be a bit more helpful towards the application process and not just a long but valid rant
I’d defo cry at a tribunal
I just had my tribunal, for an unbiased process it felt awfully judgey:(
I have Autism AD HD PDA OCD 68 now really struggling its living hell now
I had my autism assessment last year. The whole crap surrounding PIP is the major reason why I haven't bothered applying for it because it could take up to a year to get it. In the meantime I would have no money so how the flip am I meant to pay for my rent or council tax on zero money(I assume housing benefit and council tax reduction benefit stops during the claim?). The whole thing I am certain of is designed to put people off from claiming as a cost cutting exercise. I would think to think it will be better under Labour but somehow I doubt it since it was Labour that bought in the whole assessment crap in the first place(before assessments all you needed was a doctor's letter).
PIP doesn’t affect any other benefit! You can claim house benefit, UC, just about anything while also applying for or claiming PIP. That’s one of the few good decisions they’ve made for it
18 months in so far and still haven’t got there. I hate the government.
I'm with you on that, best of luck with it and I hope it comes through soon for you!
@@DanaAndersen I got 8 points and 4 points at First Tier Tribunal. Now waiting on a district judge for Upper Tier Tribunal.
Sunak's Tory Government typical tight fisted gits
I'm watching this as I'm applying for pip a 2nd time and I tell ya they gave my grandad midum level they said he walked around when he can't walk and more! it's a broken system but u gotta fight take them to court I will and this time I want my interactions with them recorded as evidence after they lied to me and they even turned my mate down who is in a wheel chair and took it of my sisters mate who is on the strongest meds u can have its a broken system and which I'm taking up with my local mp
hi i find it hard to be normal person as iam not far from you by listening to your video was really helpful as i also a suffer from autism i wish i knew from the start the trouble to get pip with no help or people behind me which my case is closed but iam going through the process to the upper tribunal my memory tends to be off and also brain fog
Thank you for this.
It is like watching a twenty years younger me talking :D (I was refused WaJong 13 years ago which is something like PIP in NL, though you need to prove that you were sick before your 18th birthday, which I couldn't then, I had been diagnosed with depression, anxiety and PTSD, but with my new diagnosis of autism I probably would have gotten approved for it back then, but yeah it's too late now, have been on regular benefits for 15 years)
I ain't going to bother try apply with my recent late-diagnosed autism, June 2023. Trying to get 'Access to Work' support after a declined PIP application years ago, was bad enough.
What I found is you have to appeal I got declined then appealed then got it
Thank you Dana
Can you make a video of your experience with universal credit if you have any?
I work for them and want to know beyond my training how people with vulnerabilities actually feel when I call them. Or would it be better if I don't call them and send them a message of what I need 🤔 I've just started this job and I've been sending messages asking the people if they want a call or if they want me to just send them messages.😅 also I subscribed ☺️
I applied in 2021, got refused and never appealed. I guess that's what they want, people to give up. On the other hand I applied for DLA for my 5 year old son and I really made sure I did everything to get it for him.
They take millions from us in taxes and national insurance so it's outrageous these comments from people saying pip is inaccessible. It's likely Tories doing
Similar to me,,, was apparently diagnosed with autism and asbergers traits,,, legal rep did not come to tribunal
So i was alone,, and decided 3 points daily living and 0 mobility,, just don't know what to do as i live alone with uc and limited capability without any element, struggle to get work also
Could you also claim the equivalent of ESA (Universal Credit Limited Capability for Work Related Activity), I have autism and am on both ESA and PIP.
Thank you for video! Very detailed and explained well and I'm glad you eventually got it. I'm applying again soon and have a public lawyer that helped my friend get it too and he has Autism. I've only really got friends with Autism, at least ones that I'll see in real life 😂 and pretty much all of them get PIP. I have Autism, Epilepsy, Quarter Blindness, Depression, Anxiety and they rejected my claim. My mum pretty much did majority of the talking to PIP Assessor as I'm really bad at explaining and remembering everything I should say and I'm also bad at making eye contact and feel really uncomfortable doing so. Sad thing is the Assessor said I was great at talking and perfect eye contact... It made me feel sick to my stomach that people working for PIP must be paid to completely lie. Even with my mum there they still lied, hate to think what they would have made up if my mum wasn't there 🙄 I got Epilepsy and Quarter blindness from a discovered rare Brain AVM a few years ago that caused a blood clot size of a golf ball and was lucky enough to get surgery to remove it and the Brain AVM. The sad thing is my mum paid £30 to our doctor to write a supporting letter to PIP to help the claim and doctor wrote my mum telling them the symptoms of my Epilepsy was vague. Which basically hit my claim massively. Luckily Neurologist wrote to the Doctor saying they offiically diagnosed me with Epilepsy and that my mum wasn't vague at all and was very clear symptoms of Simple Seizures (Focal Seizures) i have. Its also pretty much guaranteed to have Epilepsy with what happened to me and doctor didn't even write anything like that, almost said I didn't have it. Glad the Neurologist put her in her place at least but unfortunately it was too late since 1st claim was over. Applying for 2nd time now and hopefully it will go a lot more smoothly, have a lot more support from Lawyer and Neurologists diagnosas and letter he sent now so it should hopefully. Glad I watched your video to give me a better idea of what to do if it has to go to Mandatory Reconsideration. Thank you! 😊 Ps you're very pretty!!
Hello dana, I believe I have autism and adhd I just had my autism screening last week can I apply for PIP without already being diagnosed?
I did originally get it while only diagnosed with anxiety and depression so depending on what you’re able to prove to them you may be able to. Having already had a screening should be able to back you up somewhat, but they’re not particularly understanding or forgiving if you can’t show evidence of what you’re telling them!
Have you done UC working assessment ?if yes please record how it went and how you answered your questions I m so nervous they trick me with questions. I have undiagnosed ADHD waiting for asssesment and I have some autism traits too. But I do t have medical evidence yet
I have, but it went terribly and I think sharing my experience would just make a lot of people more anxious without actually providing anything helpful 😅
I had my phone appointment yesterday and honestly oof... I'm sat there laying everything I can't do out and it just feels like wow, aren't I a basket case lmao
*18-MONTHS?!* That should be a crime.
And no, you were RIGHT to tell them why they were wrong on each (bs) point that they made. It was proabably what got you your payment in the end. Luckily you are good enough with communication to get your thoughts across, image all those that aren't.
Have you ever considered writing a book on your experiences with the system as an Autistic person? You clearly have enough subjects to talk about.
Hi,can you talk about the I the true nature of ourselves? Which lays behind personification ego or experience
Great video! I'm lucky enough to be able to work, but I completely empathize with the difficulties going through the process. I've been struggling with getting an appointment with a psychiatrist for a month now so I can adjust my anxiety meds. The doctor my gp referred me to cancelled on me and never called to reschedule. And I finally managed to call another place on Monday but it went straight to voicemail and I panicked. I then called again prepared to leave a voice message this time and haven't heard back so that's fun.
Can you make a video on selective mutism? I think I might experience it sometimes but I'm not sure. I don't have a good grasp on what exactly it is and what it should feel like. Most info is on what it looks like from the outside.
Late last year the DWP announced that it will introduce a scheme to help people applying for PIP who find the process difficult. It covers people with different conditions including Autism. Sometimes a claimant will have someone to help them apply which could include help with filling in forms (Personal Acting Body, PAB) if the claimant does not have one then the DWP will provide someone to help. Will this be a DWP employee? Let’s hope this will improve the situation. The whole process can be complex and stressful. As well when will this start and how would one apply? Would it help someone’s confidence if there is a properly trained helper from the DWP itself? As well let’s hope it helps a vulnerable person feel legitimate in making a claim.
I first got it in 2013 when pip was first introduced, i was told i should never be taken off the award, my mum claimed it for me at the time, i was receiving it for 8 years no problem, until COVID times when the government started money grabbing, they took it off me, i re applied they gave me 0 points, i took it to court they paid me over 5k back and gave me my pip back then this February they took it away from me again for no reason, i am currently squatting as i was supposed to move out my property but i literally can't afford to, i literally just got my letter telling me that i aint eligible, im going straight to the court again theyre gonna have to backpay me again, absolute idiots and they say the government is supposed help People
2 mins ,,,spot on… horrid experience even applyin.
Thanks for this.
I should have applied years ago when I had a social worker and an autism care worker. Budget cuts i see no one now. All the evidence i have is a 10 year old nhs letter saying i have aspergers. 😐
After being diagnosed with Autism recently I had my face to face meeting 2 weeks ago and so just awaiting the outcome with regards to being awarded Standard or Enhanced, or zero 🤔...
Face to face doesn’t happen these days everything on phone or online
Thank u for the video
Good post
How are you nice vis I waiting for my answer had the assment
i think if your diagnosed with autism or adhd and have the paper work to prove.... how are we faking it ..ive just been diagnosed with autism..i am struggling with life but somebody else has to check me out again to get bit of extra cash is just not fair ... i am 38 never owned house or flat .. i last went on holiday when i was 18 years old just stuck in the same every day loop hole shit has everything has got worst
It’s a joke . I just rang up today . I said I will send more evidence when it goes court 😂
Had my tribunal today and the monsters denied me what I absolutely believe I am entitled to having. They simply just don't get it. Because I can dress well and had a job of something for 7 straight years seems to mean I am normal.
There is nothing normal about my life at all. I have literally had no friend all my life or anything. I can't even get a passport because I don't know anyone. This whole system is totally corrupt. I genuinely believe because I was on my own without a representative that the panel sided with DWP. They couldn't even have the guts to tell their decision to the face. The decision was confirmed though within half hour of me leaving the building because I checked the online tribunal portal. Absolutely vile system!
I dont mean to sound jealous or anything like that. I'm just annoyed. I could literally just totally give up and not even try to push harder I suppose. My condition has got even worse in recent years but they just don't listen. The system literally doesn't make sense. It's not like PIP is permanent. If I got better they could easily take it off me for example. The whole thing is wrong.
Why don't you go for UC, you said PIP is your only source of income?
Until very recently I lived with my partner who worked, meaning he was earning enough that I wasn't entitled to it.
@@DanaAndersen oh, that makes absolute sense. It's tricky with relationships how to split income. I hope you're doing well.
relayuk can help you w the call
My daughter and my bro are autistic but they got their pip on first try. I’m just starting my own claim with autism send anxiety but I know I won’t it on the first try lol
The letters they sent with the 0000000 points are they nastiest things ever 🤮
yh pip assessors r horrid
I get a depression if I don’t book a Eurostar
Money! Is the root of all evil
The LOVE of money is the root of all evil. Money itself is not evil
It seems everyone has Autism these days. Utterly shameful that this benefit is being abused in this way. It was meant to go to genuine people who are born with severe disabilities or someone who contracts an illness that renders them disabled. Not for made up nonsense like ADHD Autism and Anxiety.
ADHD, Autsim and Anxiety ARE ‘REAL’ disabilities! Your attitude is disgusting! Ableist bully.
Your a rat 🐀
Autism is not made up.
Are you like 95? What is wrong with you? They are scientifically proven to exist. Autism, for example, is due to an underdeveloped frontal cortex in the brain. Educate yourself before making ridiculous, uninformed, ignorant and downright stupid comments like this.
@@BloodMoonASMRget a grip... Autism is a scam!!! You get 750 quid a month because 'of my anxiety', and poor people who have had a stroke are lucky to get a penny. No you tell me what's a disability.
I'm glad they are over hauling pip. You lot will have to work then. Lazy sods lol.