Published on 12, July, 2020
I'm new here, so I thought I'd say hello and a bit about myself.
I'm 46 and was diagnosed in August. That in itself was a journey and a very strange experience (and a story you've probably read here many times). Growing up, I was always "different", rather read a book to escape than be playing with siblings, typical autism traits such as collecting things, counting, etc. You've been through it or heard it all before! I also used to fall asleep easily.
However, just to be different, I have a rather sadder tale to tell, and to be brutally honest, I only started to talk to someone about this when I was 40. Up until then, I was masking (badly it seems in hindsight!)
I always got the feeling that my parents struggled with me - in particular my father. When I was 8, I was taken to a psychiatrist, which I recall vividly as being a "bad" experience - although it wasn't and he was pleasant enough, however my parents were present at all times. I only had a few visits and never really understood what was going on. I recall one test being to write down my address, then tell him what was wrong with the way it was written (some letters were bigger than others). Little did they know then that freedom of information would come about!
I recall trying to explain to my parents several times my sensory issues, but as a child it is hard to explain, and I was laughed at. Other traits I was beaten or threatened if they continued, and after the psychiatrists visit he was used as a threat - "You don't want to have to go back to that man do you?" kind of thing.
So, I stopped talking about the flashing lights, the noises, etc and tried to be normal. When I fell asleep I was called lazy - some mornings had cold water thrown on my bed to get me out of it, and tried to carry on like everyone else. I don't recall ever having a meltdown, but of course we didn't know about shutdowns then.
As time has gone on, relationships with my parents have faded to nothing, but I did manage to keep in touch with my brothers and sisters. At a distance. I went on to have several failed relationships and in some cases children in those relationships. I am in touch with my kids which is a blessing because as a parent I am terrible.
One of my kids was diagnosed with Aspergers a few years ago, which got myself and his mother talking about me, and she suggested I get tested - I mentioned this to my mother & sister as we were still vaguely in touch at the time (although in different countries) and they went mad saying she was disgusting for suggesting such a thing, so I put it out of my mind for a while.
During the time up to around 5yrs ago, I had held down jobs - highly paid professional careers, yet still managed to lose two homes and be evicted several times (we recently counted 6 but I think it's more), have zero savings and nothing to show for it. Now we know why, but at the time I was always "why the hell am I like this?".
When I was 40 (around 6yrs ago), I met my current partner. She has been amazing. The first time I stayed at her house, I offered to walk to the local shop - it's a straight road in a small village with the shop on the corner. That was fine - I got to the shop no problem! An hour later she rang to find out where I was, and I had to describe local buildings so she could drive to pick me up - I left the shop and went down the wrong road and got totally lost (I was in the next village!). So, virtually from the start she knew I was on the spectrum - just not much more else.
Skip forward 6yrs, and after the usual relationship issues I have always had - the partner feeling used, neglected, unwanted, etc, things came to a head. I don't know how to explain what happened, but it was like a total blackout. She went to a mates house for the night, so I went to bed. So I thought. She got home next morning to a load of suicide notes made out to my kids. In a panic, she called the police.
So, the fallout from that led to more open discussions about shutdowns, sensory pains, etc and she started reading more about the condition, and encouraging me to read more (a lot on this site), and so we decided to make an appointment with the Dr - she agreed to come with me. She has barely left my side since.
I was under the impression it would take years to get an appointment - my first one was due on the same day that a TV documentary went out about the missed generations of autistic adults - the Drs cancelled that appointment, and that night we sat down and watched it - I was amazed at how much I related to everyone, so we did the Cambridge test. She did it as me and scored 43. I did it as me and scored 48. So we made another appointment with the Dr for the following week.
I had nobody from childhood there, but mentioned the psychiatrist, so he dug out my paper notes and started to read them out loud. He was visibly shocked (even to me who doesn't pick up expressions!) and asked if I wanted him to continue. Basically, my parents had painted a picture of me to their Dr to get me a psychiatrist. This had stories such as beating up a disabled child to steal money at school! This never happened! I was so upset after that I even contacted my primary school teacher at the time - she's in her 80's now, and she said all she remembered was a quiet child that never gave her a days trouble - then said she had always worried about what happened to me because she'd met my parents and found them to be abusive. This tallied up with the psychiatrists findings that there was nothing wrong with me other than an abusive and over bearing father.
The upshot was that I got an appointment with a psychiatrist very quickly. We thought everything was going to be fine! How wrong was that? I was diagnosed very quickly with severe autism. No explanations as to the tests I had done, or what getting three '9s' meant - and discharged from her service. After 6 weeks, I contacted my Drs surgery and was told I hadn't been to the appointment. I said I had and was waiting for us both to get the results by post. Eventually they arrived, and the surgery asked me to go in to discuss the results.
Unfortunately, my usual Dr was away so there was a locum. It's a lot for me to travel, and I have to mentally prepare to get there, but I left feeling sick and depressed. He came across as I was wasting his time. He asked if I was depressed and I said yes - I didn't handle the diagnosis well and felt like I needed support. His reply was "I don't know what you expect me to do? Have you tried the internet?" I was made to feel like I shouldn't have been there, and the appointment lasted 5 minutes. My regular Dr has been great, but he doesn't seem to know what to do either!.
So - onto PIP. My partner filled out a very detailed form - it took us the whole month to fill it in, and she was reading up on what I was trying to explain, sending me videos asking "is it like this?", reading pages and pages online, trying to get an insight into how this affects me, and she has been amazed at the effects it has that I kept hidden. We thought she had done a great job.
27th December, we went to the F2F assessment. I haven't slept since, and she is barely sleeping because she is so upset. She was there with me to communicate answers because I could barely speak, yet the assessor kept asking her to stop talking because it was my assessment not hers. Every time she tried to help, the assessor was getting more and more stern with her, and saying "he needs to answer me, not you - I am asking him the questions".She asked about any habits or needs to do things - I told her I code software. She said twice she couldn't put that down because she doesn't know what code is. So we explained it was how she is using a computer, etc. She asked how long I do it, I said roughly 12hrs a day. Later on, I made a comment about how hard waking up can be - it can take 4hrs to focus and fully wake up - and in that time I can't co-ordinate to tie shoe laces. She looked at me and said "yet you can co-ordinate your fingers 12hrs a day on a computer". When it came to finances she said "that's very strange - in all of my dealings with autism, "they" are very good at paying bills". We felt like she was making out we were lying all the way through the assessment. She didn't ask about sensory issues, shutdowns, etc and when we tried to explain we were shut down. She also asked questions I just didn't understand. The first one was "how does this affect you?" about autism in general. I asked what she meant, or in what circumstances and she said "you just need to answer the question". At that point I asked my partner to help me, and she said "no - I am asking you. This is your assessment". She must have seen I was getting upset and kept saying I didn't understand the question so she let my partner speak - but she said the same thing - what do you mean by the question? So that question seemed to have been skipped!
She asked briefly about support I get - so we said I have been trying but there appears to be nothing - I guess that goes against us too. We touched on work, so I told her my problems with keeping jobs, timekeeping, staying coherent for 8hrs, etc and she said "oh you are trying for ESA too then" in a disproving voice.
So anyway - sorry for the rant - I kept it as brief as possible and left a lot out! But that's me....
I've looked around online and it seems the reports are cut/paste responses with a few details added that relate to the claim.This lady had virtually the same report for CF.
https://www.youtube.com/watch?v=lwBHWu9j8PM&fbclid=IwAR3j83VwlRtHozUKEfzjSgHNiQnoagUU4317FIHe7eOwuwyMIF5_WCTNpMU
Welcome to the forum. I’m glad you finally got diagnosed but it sounds as if you’ve had a long journey and a lot of hard times to get there! As for the PIP assessor, what an idiot!! Does she not realise that one of the main symptoms of autism is difficulty with social communication?! To be honest it sounds like she didn’t know too much at all!
I might be wrong but I'm sure the call centres record all their calls so when you complete your mandatory reconsideration make sure to mention this call.
I lost my pip appeal (not autistic just alot of physical problems and anxiety ) got nothing for mobility as I can go to the shop. Despite me pointing out that I have to stop 3 or 4 times to allow pain to subside and I only live 186 meters from the shop!
Contacted the DWP about the mandatory reconsideration - they ask for a few brief details why prior to sending the form out. My first response was that nobody so far has any experience with autism and the assessment isn't geared that way. He agreed and said he has experience with autism and it's not a good process. That put my mind at ease as I went on a ramble about the comments etc. He was shocked at the report given my replies.
I told him I'd explained in detail the sensory issues and he said "they aren't always visible" so he knew roughly what was going on. I said I'd explained the effects of a 20min bus journey ruining my day as I just shut down as soon as I get home - even he said "so how does writing software mean you can do this?" Then I told him the assessment was a 90min journey to a strange city center on 4 buses and he said it was wrong for them to have done that.
Sods law - the only person in the process so far that comes close to understanding it works in a call center!
So, got the PIP results today. No surprise that it was all 0's."You told the assessor you can eat food including sandwiches, can take medication, have poor coordination and have no issues speaking or hearing. You were dressed appropriately for the climate and there was no indication of neglect of your personal hygene. You said you walk your dog daily and do your own laundry which require coordination. You said you run websites and write software which requires great intellect and cognitive ability. You understood and followed the assessment process. You showed good memory when giving an insight into your history, conditions and medication. You were observed to have no difficulties expressing or understanding communication. Your verbal and non verbal interaction with the assessor was appropriate. You did not need prompting and showed good concentration when answering the assessors questions. You engaged with the assessor with adequate rapport and eye contact, without showing signs of anxiety or distress. Although you reported experiencing sensory overload, you appeared to cope with bright lights at the assessment center without difficulty."
That's the breakdown - it's all one paragraph on the report and not easy to follow. But REALLY - it's kind of like they are talking about me but not actually talking about me!
It was explained that every day, I cannot coordinate when I first wake. I told her I can't even tie shoelaces for the first 4hrs, and wake to sensory overloads.I don't make hot drinks as I tend to pour boiling water over my hand (something in my head says the drink needs stirring, whilst at the same time I am puring water).
I don't use the cooker as I get distracted or walk away. Yet they say eating a sandwich is ok - is that the preparing a meal part? Or is that taking nutrition?
It was explained that I often go days without eating as I just forget. If I have had a bad day with sensory issues, I collapse fully clothed on bed and that's me gone for the night.
The person I took with me explained that she had told me to take a coat as although it wasn't too cold for me when we left the house, it would be later.
I didn't say I walked my dog daily. I said I walk her occasionally at 3am to avoid sensory issues and meeting people.
I had great difficulty with the assessment, and freaked out a few times at the questions. There was zero eye contact, partly because I just can't, and partly because the light was directly behind her, so I spent almost all of the assessment looking at the floor or my support. The assessor noted I had my fingers laced - they were clenched and I was rubbing my thumbs to keep calm. She should have also noticed all of my fingers were raw and bleeding as I chew on them when I am anxious.
Interestingly, for the mobility part, they copied and pasted the same thing. Because writing software relates to getting on public transport!
The whole process is a cruel joke, and now I have to do the consideration to get 0 again, then to court.
I have quite a few media contacts as well as BBC, so might get round to documenting everything and see if I can get a contact to put it into "media speak" and get it picked up.
Hi DC
ever changing sand and requirements plus a spectrum child never mix. I hope you’re ok x
Greetings. This Thread may be disguised under the Title "Hi Everyone!", but then goes onto very different matters...
People who Diagnose Autism, are 'the Meow of The Cat', so to speak. -- But after that, it is all 'wannabes' who are given no qualifications except a Wage or just Money. I, too, had a DWP interview, Four years ago, & she noticed everything and I was awarded whatever was needed. But strangely, only two years after that (I thought it strange that I would be "RE-assessed" so quickly) I attended a similar interview and was ignored/faffed/lied about, in similar manner to those who have also posted here. I have a fair few Illnesses as well as Autism... but all of a sudden, these were ignored!...
So I post here in support. If someone could write a Book about this, or was brave enough to expose it upon mainsteam Media, then that would be superb...! Meantime, I am still curious to know what the LEGAL Term is, for having this sort of Conniving done at people. I cannot really say more than that, really. (Apart from Voting Up Everyone here so far...)
Really sorry that you had such a bad experience, but as far as the government is concerned the system is working as intended.
There are countless stories in the media of cruel & arbitrary rejections for benefits by asessors that have no real medical qualifications & who seem to have nothing but contempt for the people whose lives they are affecting.
Using private firms was a terrible idea, since they usually employ cheap under-unqualilfied staff that have targets incentives to rush through assessments unfairly rejecting as many people as possible. The majority of benefits are reinstated on appeal, but this process can take months during which no benefits are provided.
Sadly, the Government's response to the high percentage of cases overturned on appeal is to look into ways to make the appeal process more difficult, rather than scrap a system that has been demonstrated to be fundamentally flawed & sadistically cruel.
Allegedly Labour will scrap the current system if it gets into power ath the next election, but since it was New Labour under Gordon Brown that introduced it (because of his obsession with horrifically bad PFI contracts), I have my doubts.
Hi - I'm really sorry that you got this result but it's not unexpected - they seem to be bouncing everyone with hidden disabilities so no matter what you said in the interview, they were looking for ways to deny you.
I got a copy of my interview and it was like reading about someone else - cut-n-paste comments that were totally different (night & day) to what was said.
Me telling her how stressed I was and being so frustrated that I was jiggling the whole way through means nothing to them.
You may end up having to go to tribunal.
I think it's digusting how we are treated - and we're the least able to coherently fight back - and they know it.
I haven't had the results yet, but we did ask for a copy of the assessment which arrived today. No surprise I scored zero points. We will be going for an MR when the award letter comes out in about 4 weeks (assuming it stays at zero).She seemed to be obsessed with the fact I said I write computer software and can end up coding for 12hrs. She's pasted the same comments about that in almost every box! I can cook a meal because I can code 12hrs a day. I can interact with people because I can code 12hrs a day! She also said I made good eye contact (I didn't). Had no problem "lacing my fingers together - they were clenched due to stress - yet she said I showed no signs of stress or anxiety! Basically, she has kind of noticed stuff but not noted the reasons why. She has noted I commented about the lights being too bright, then said the room was brightly lit but I showed no signs of sensory issues! Looking at the floor for most of the assessment meant nothing then?
Yeah, it seems standard! And in the report, you'll no doubt find things that are simply not true. For example, the assessor said I made good eye contact and showed no signs of anxiety, however, I wore dark sunglasses throughout the assessment and didn't look at her once and I was so distressed I couldn't sit still, I kept walking up and down, to which she said, I can see this is difficult for you but we're nearly finished!!! There's also a site called benefits and something else (sorry, I've forgot the name but I can find it out) ~ which gives all the latest info regarding benefits and assessments etc and if you subscribe, it gives you a step by step in depth account of how to complete the questionnaires and how to approach tribunals etc
Yeah - she was all out to set traps. She started the process with "so you are applying because you had a meltdown in March?" We tried to explain that I shut down daily but she didn't register it at all. She also asked if I have a driving license - I do. We tried to explain that I haven't driven for 15yrs but all she focused on was I can clearly find my way to places despite being constantly lost. My partner tried to explain when we are out in places I have been to before, I have no recognition, or we will be out I am saying "I've been here before" when I haven't, etc. That's why I stopped driving! Constantly trying to shut my partner down when she was there to communicate for me was agitating.
She should be dismissed for asking such a ridiculous question or maybe it's part of the training to make our applications seem as ridiculous as possible by asking us ridiculous questions. One of the appeals team, did say to me, so you worked as a social worker, which involves communication skills and organisational skills - implying that I couldn't therefore be autistic ~ I just said yes! Another one, the doctor, asked if my psychiatrist agreed with my diagnosis of autism ~ I said he diagnosed me! It was all a bit ridiculous really but I won the appeal so I'm pleased about that.
You've just reminded me of another question lol - we were talking about social interaction. My partner said one of my problems is reading people and situations - the assessor said "so if I was laughing or crying you wouldn't know how I was feeling?". I think she kind of missed the point!
It seems to be a common approach the assessors take ~ fail them, fail them and fail them, unless it’s blindingly obvious, for example, the person has no limbs, has a body ridled with cancer, can’t see, feeds via a tube etc etc and is about to die!
I was turned down on my first attempt and couldn’t get it together in time to appeal. So I tried again. Got turned down again but this time I did appeal. I went to my appeal last week and they awarded me the enhanced daily living component but only 4 points for mobility. It was clear the assessors at the appeal, didn’t really understand autism but they could see how it affected me. However, they went on a report my autism worker wrote for me, so I’m grateful she did that for me.