Are the DWP and government trying to kill us all off?

I have no support. I am totally independent, newly diagnosed much older person. So support is non existent. This is my only support.  Muddling through. But it just isn’t working. 

When I say NTs think differently I am of course generalising. Most lack logic or even the need for it. I assumed until relatively recently that if I explained my reasoning they would at least try to consider it, like I would try to consider theirs. But no. The majority won’t. Or rather the ones with more power to do anything won’t. I am giving up. What’s the point of talking to people with no ears and faulty wiring between the spaces where their ears should be? I really don’t know how to cope with them. 

I am really happy your experience was good.

However, I think that it is better when people have negative experiences that they speak about it. If the process works then it doesn't need changing, but if there are problems, the DWP and the govt cannot act on them unless we speak up and say there's a problem.

You mentioned independent evidence, as though not getting a good result somehow was linked to poor evidentiary support. I actually submitted 221 pages of independent evidence, covering 8 different professional bodies including NAS support workers. It still took a year of fighting and an appeal tribunal to get my benefit awarded.

Also, independent evidence is not always read as it is meant. In my case one statement from a supporting professional was quoted out of context to support the government's argument, even though the whole document did not support their view. The professional in question wrote a follow up statement refuting the Government's use of her words for my tribunal, but that should never happen. None of the rest of my evidence was cited until the point of tribunal.

I don't say any of these things to make people anxious or afraid. On the contrary, I say it to make people aware. Autistic people don't do well with surprises. In my case, the fact that so many people had had a bad time but had had decisions overturned at tribunal gave me the strength to keep fighting even through a really hard year.

If you are lucky enough to have a good assessor and a good reviewer then that's awesome and it gives a lot of people hope going forward. But it is not the experience of everyone, and if you tell people it will all be fine, and then it isn't, they are more likely to worry that there isn't a solution in sight. In short, the whole process is horrible. But even so, it's still possible to get things sorted out in the long run, so it is worth fighting and proving your case.

At least, I think so.

Although I know there are a lot of horror stories, especially with regards to disability benefits, I've found my dealing with the government to be nothing but pleasant. I've been awarded PIP twice (initial application and renewal) based on my application and f2f interview. It appears that if you provide independent evidence to back up what you're saying its no longer a 'he said, she said' case and the process runs smoothly. 

When I first applied, what I found really frustrating was internet forums. As the ones who've had a good experience don't have any frustration to vent they tend to be quiet, this meant I read a lot of horror stories but not many positives ones. This caused me significant and needless anxiety. 

I went through hell on Earth back in February when I got the dreaded benefit review letter... it was about 3 months of total stress which involved a Work Capability assessment too, the most horrible stressful time ever out of it all.

However this was before I was diagnosed with Aspergers, and my whole benefit rested purely on my OCD and social anxiety.

But the assessor was quite nice and could see I was distressed and it all worked out.. but it was still a horrible time.

I thought that maybe if I got a diagnosis for ASD then all this benefit stuff might become easier, and that I may even be able to claim PIP and my wife would be able to claim carers allowance too.

Now I have a diagnosis of ASD I’m not so sure... and I’m scared of going to claim PIP because this would involve another work assessment which terrifies me!

its not easy is it!

I do sympathise with you... I really do!

Thanks

Ade

Unfortunately there's not a lot of understanding or awareness about the realities of autism for people living with it. Most especially the fact that if something happens that's upsetting or unfair/untrue, we have bigger problems putting it aside or getting over it until it's resolved. I don't know if you are dealing with the DWP re benefit or assessments but my experience of those basically taught me that the assessments and reviews tend to be riddled with errors and there's nothing you can do about it except wait for tribunal. For me it was a year and even though I got my award, I didn't get points for everything I need support with because ultimately people have preconceptions and no amount of discussion can shift them from thinking they know better than you what your life is like. I also genuinely don't believe anyone would get through an assessment faking autism if the assessors were trained in autism, because anyone playing to the stereotypes without exception would obviously stand out as suspicious. Real autistic people have varied needs. We're not robots.

But it is also partly for us to try and get out there what autism is like in terms of reality because we all have a slightly different form of it and we need to make people understand that so that changes happen. Definitely try and get in touch with any local autism charities or MIND if you can, even going to the CAB might help although some of their advice to us turned out not to be accurate in the tribunal so don't rely on it 100%. It might also be a good idea to send an email to your MP. I know some MPs are actively trying to get things improved, so the more voices from real people they get the better.

As for figuring out NT - I don't like the term neurotypical. It's easy to see a line between us and them when the DWP are giving you stress, but real people are nuanced whether they have ASD or not.

Hope you feel better :)

Rip Van Wrinkle said:

I can’t get my head round the fact NTs think differently.

There are good and bad among all groups. We are 1% roughly of the population so there is a big world of good and bad to encounter. 99% of the world is NT roughly. The worst thing you can do in my experience is start to see NT's as the "other". You will meet a few bad ones or have bad experiences with them and then you will start to either hate, fear or have a distain for them.

The whole DWP experience is stressful. I wish you all the best.

Don't you have a worker or an Autism center near you?

Thanks. I can’t get my head round the fact NTs think differently. I can’t get my head round anything right now. Not even a lamppost! I’m off to bury it under a pillow now. Night. 

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has. 

Margaret Mead

Ahem, religion is the biggest crutch. Death is too final for most folks, they have to believe in the ever after. Which they will become, it is the first law of physics, nothing is lost all is converted.

Okay. You win. Opting out doesn’t change anything. Now I understand why people need alcohol and drugs. When the world doesn’t make sense.... fuzz it up. 

Nope i aint getting off, dya think it gets better by opting out? Does brexit make sense? Same thing really; Id rather stay in and change it from within than opt out and try to influence it from erm, well who really knows

Good analogy eh?  ;) 

Perdu, your rant is much more coherent than mine. Kinda cathartic really. Trouble is it seems true right now! My head is resounding... so I will leave it there. If I were younger I would probably be smashing my head against a wall. Stop the world! I want to get off!!!!!!!!

Soooo...... Erm....... Tricky one this really...... Erm........ Welll here goes...... umm.....

Yes.

Autism is the most expensive of all conditions the NHS treats. 

http://www.lse.ac.uk/website-archive/newsAndMedia/newsArchives/2014/06/Autism.aspx

(ker-ching for the Autism Industry Inc, not so good for us)

Certain political ideologies hate diversity especially our type of diversity, which seems to be an almost roll of the dice, RPG Character Creation Tool: Autism Edition© type deal.

Within that diversity lies the beauty and also the curse; We're different. Genetically, emotionally, mentally, physically, most importantly spiritually; We are our own people; No Gods, No Masters.

You've heard the old adage "It's like trying to herd cats' well i think that applies more to us, we are not of the herd mentality, we might think we want to be but that is just a yearning for acceptance, which only comes from within.

If the RPG Character Creation Tool: Autism Edition©  throws up too many smart folks with asd and it becomes (CONTROVERSIAL TERM INCOMING .......... TRIGGER WARNING LOOK AWAY FAINT HEARTED PEOPLE)  "weaponised autism" real change could take place, it already has....

But really the secret is how do i hack this thought? Hack? Wuttt?

We can hack our autism; find smart ways to control it, to harness it, to use it positively.

This ones easy..... (PDA, ODD hack) 

They want me to die? Well **** them!!! I'm gonna live the best life i can, scream from the top of the mountains, create the most awesome *******stuff possible, DO the most awesome *******  stuff possible, BE the most ******* awesome possible version of..........ME

******* to the lot of em.

Moderators.

If you don't like the faux swearing, get a grip.

ETA  *THEY* moderated the faux swearing so i corrected the spelling as it should be.

WOULD YOU TELL ANY OTHER MINORITY HOW TO EXPRESS THEIR RAGE?

CHECK. YOUR. PRIVILEGE. 

Average life expectancy HFA/Aspergers 54.

Leading cause of death SUICIDE.

If you're not angry, you're not paying attention, it is OUR cohort who are dying, moderating posts because some language may offend is in itself OFFENSIVE, I WILL CHOOSE TO USE WHATEVER LANGUAGE I SEE FIT TO EXPRESS MY OUTRAGE AT THE MURDER OF MY PEOPLE.

First they came for the Socialists, and I did not speak out—
Because I was not a Socialist.

Then they came for the Trade Unionists, and I did not speak out— 
Because I was not a Trade Unionist.

Then they came for the Jews, and I did not speak out— 
Because I was not a Jew.

Then they came for me—and there was no one left to speak for me.

Also ponder this,

"In his speech, Professor Baron-Cohen reminded the UN that in Nazi Germany

during the Holocaust, people with intellectual disability were killed in their thousands"

We are speaking out against what is happening to us, the question is, are you really listening, or is it just a case of 'mummy knows best'?

[Edited by Moderator]

[EDITED BY OP]

NAS may *THINK* they speak for all autistic people, you do not, in future trials you will be seen as collaborators, the 'work' you undertake with government is merely tokenistic.

Any body (quango) who was truly fighting for us would be able to rip this government to shreds ESPECIALLY with the inside access you are given. Unlike most people on here i read all the hansard docs and have witnessed the lip service given but never actually seen any teeth. Why is that? Why seek to control the narrative? Does our reality run contra to the narrative you are attempting to sell?