the catch-22 of claiming welfare as an autist

[theporgsnest]

So, I appreciate that everyone on here has a different view towards social security disability benefits, but for those who have tried and have been successful, how did you find proving you have issues in social situations and communicating ...by talking about these things to an assessor?
I also appreciate there may be differences in how these things are carried out. I'm in the UK and trying my 2nd claim at PIP - the first was not successful and I didn't appeal it literally to having no willpower to do so and being in a bad place. Being that I'm pretty much in the same circumstances as before, I thought I would try again. I'm very aware that the people behind this do not have your interests at heart and do not want you to get any daily living help. I assume also it's just another box-ticking fault in the system that the PIP process really does not help neurodivergent people at all. Essentially I have to prove to a health care professional who may have a brief google search's knowledge worth of what autism is that I struggle to engage with people by talking to them. It's maddening.

 

[Matthias]

So, I appreciate that everyone on here has a different view towards social security disability benefits, but for those who have tried and have been successful, how did you find proving you have issues in social situations and communicating ...by talking about these things to an assessor?
I also appreciate there may be differences in how these things are carried out. I'm in the UK and trying my 2nd claim at PIP - the first was not successful and I didn't appeal it literally to having no willpower to do so and being in a bad place. Being that I'm pretty much in the same circumstances as before, I thought I would try again. I'm very aware that the people behind this do not have your interests at heart and do not want you to get any daily living help. I assume also it's just another box-ticking fault in the system that the PIP process really does not help neurodivergent people at all. Essentially I have to prove to a health care professional who may have a brief google search's knowledge worth of what autism is that I struggle to engage with people by talking to them. It's maddening.

How exactly does autism make you unable to work?

I've had problems with work but it was mostly due to social anxiety from not understanding people very well, stress, and depression which I was able to correct using CBT.

 

[theporgsnest]

How exactly does autism make you unable to work?

I've had problems with work but it was mostly due to social anxiety from not understanding people very well, stress, and depression which I was able to correct using CBT.

maybe I should have elaborated that I do a small amount of work a week (for myself) and this benefit would help me with additional costs, because I currently wouldn't be able to work full-time. I realise there are psychological elements such as anxiety that are holding me back - and these I can help with and improve - but there are very few work environments I would be able to reasonably cope in. Believe you me, I have my pride and don't really want to live off of handouts, but currently this is the situation I am in. And to some degree I am entitled to financial help that is offered.

 

[VAW]

So, I appreciate that everyone on here has a different view towards social security disability benefits, but for those who have tried and have been successful, how did you find proving you have issues in social situations and communicating ...by talking about these things to an assessor?
I also appreciate there may be differences in how these things are carried out. I'm in the UK and trying my 2nd claim at PIP - the first was not successful and I didn't appeal it literally to having no willpower to do so and being in a bad place. Being that I'm pretty much in the same circumstances as before, I thought I would try again. I'm very aware that the people behind this do not have your interests at heart and do not want you to get any daily living help. I assume also it's just another box-ticking fault in the system that the PIP process really does not help neurodivergent people at all. Essentially I have to prove to a health care professional who may have a brief google search's knowledge worth of what autism is that I struggle to engage with people by talking to them. It's maddening.

In my son's case he wasn't able to work because of a Physical disease, His U.C. was one of the worst cases his surgeon had seen other than cancer, and they still turned him down twice before we got a lawyer to handle the case. By that time we had him also diagnosed with ASD, avoidant personality disorder and high anxiety. I don't know if between all of that tipped it in his favor but they didn't ask any questions about the ASD, they strictly went from the paperwork I turned in from the Neuropsychologist. Do you have an official diagnosis? because here in the states they won't even consider anything with out the official diagnosis. We had 3 doctors who claimed he had ASD but they wouldn't go by any doctor's written word, it had to be by the proper one for them to even consider it. IT was very frustrating and took years. The one thing I will say is have all your ducks in a row before you even start. And get as many doctor's opinions if you can, even though they don't usually go by regular doctors, get the specialists in that field. The first time my son had test results back from a person who worked with ASD's and had all kinds of degrees to do that but she couldn't give an official diagnosis so they wouldn't even consider it.

 

[Matthias]

maybe I should have elaborated that I do a small amount of work a week (for myself) and this benefit would help me with additional costs, because I currently wouldn't be able to work full-time. I realise there are psychological elements such as anxiety that are holding me back - and these I can help with and improve - but there are very few work environments I would be able to reasonably cope in. Believe you me, I have my pride and don't really want to live off of handouts, but currently this is the situation I am in. And to some degree I am entitled to financial help that is offered.

I don't know how disability works in the UK but I wonder if you might have a better chance of getting disability if you get diagnosed with an anxiety disorder and claim you can't work because of anxiety (in addition to autism) if that is contributing to you being unable to work full time. In the meantime, while waiting to see if you're approved, you may want to get a good self-help book on using CBT to treat anxiety if that's a significant problem to see if it helps.

 

[theporgsnest]

In my son's case he wasn't able to work because of a Physical disease, His U.C. was one of the worst cases his surgeon had seen other than cancer, and they still turned him down twice before we got a lawyer to handle the case. By that time we had him also diagnosed with ASD, avoidant personality disorder and high anxiety. I don't know if between all of that tipped it in his favor but they didn't ask any questions about the ASD, they strictly went from the paperwork I turned in from the Neuropsychologist. Do you have an official diagnosis? because here in the states they won't even consider anything with out the official diagnosis. We had 3 doctors who claimed he had ASD but they wouldn't go by any doctor's written word, it had to be by the proper one for them to even consider it. IT was very frustrating and took years. The one thing I will say is have all your ducks in a row before you even start. And get as many doctor's opinions if you can, even though they don't usually go by regular doctors, get the specialists in that field. The first time my son had test results back from a person who worked with ASD's and had all kinds of degrees to do that but she couldn't give an official diagnosis so they wouldn't even consider it.

Yeah, thankfully I've had a diagnosis for over 10 years now. The way the benefit works though is not what condition you have but how it affects daily living. Their system of marking people doesn't work very well for mental health even if you have bona fide diagnosis and reams of paperwork from professionals. If you don't act like what you say on the form you fill in before your interview (because your every behaviour is scrutinized) then you get marked down as having no problems. For example I say in my form that I have trouble mixing with people in social situations due to my condition and sometimes it causes me stress and anxiety which affects me for the rest of the day but the interviewer decides that me talking to them to an adequate degree therefore means I don't problems - what do you do. I have to talk to them otherwise my claim will be automatically rejected.

 

[theporgsnest]

I don't know how disability works in the UK but I wonder if you might have a better chance of getting disability if you get diagnosed with an anxiety disorder and claim you can't work because of anxiety (in addition to autism) if that is contributing to you being unable to work full time. In the meantime, while waiting to see if you're approved, you may want to get a good self-help book on using CBT to treat anxiety if that's a significant problem to see if it helps.

This I have been considering to be honest. It's a bit of case of playing their own system because if you don't fit their requirements then you don't get help. It doesn't help that the assessors tend to lie in their report that decides what you get, either. As I mentioned in my reply to VAW, my previous assessment report stated that although I said I had difficulties communicating, I 'appeared' fine and showed no signs of distress.
I'm not sure how the disability benefits - is it SSI?- works in the US but here, after you have filled in a 40-page form disclosing how your condition affects you, you have to attend a mandatory interview. Even if you give reams of paperwork, they need to see you in person (the previous benefit was paper-based only and the government felt that fraudulent claims were costing them hundreds of thousands. Which is fair enough, but some people will simply not be able to attend said interview, and so they miss out on help)

 

[Matthias]

This I have been considering to be honest. It's a bit of case of playing their own system because if you don't fit their requirements then you don't get help. It doesn't help that the assessors tend to lie in their report that decides what you get, either. As I mentioned in my reply to VAW, my previous assessment report stated that although I said I had difficulties communicating, I 'appeared' fine and showed no signs of distress.
I'm not sure how the disability benefits - is it SSI?- works in the US but here, after you have filled in a 40-page form disclosing how your condition affects you, you have to attend a mandatory interview. Even if you give reams of paperwork, they need to see you in person (the previous benefit was paper-based only and the government felt that fraudulent claims were costing them hundreds of thousands. Which is fair enough, but some people will simply not be able to attend said interview, and so they miss out on help)

It's hard to get approved in the US. They need a diagnosis for everything. If autism causes anxiety but you aren't diagnosed with an anxiety disorder, they'll ignore it since it's not an official symptom of autism. Since most of the symptoms of autism are social, and there are jobs that don't require working with people, it's hard to prove you can't work because of autism. For example, if you can do data entry where you sit in a room by yourself and just type stuff into a computer then you wouldn't be considered disabled. If you can type a response on a forum for 5 minutes they'll assume you can do it for 8 hours a day, 5 days a week. If you can work one part-time job, they'll wonder why not two (one in the morning and one in the evening with a break in-between).

 

[Aspychata]

They have to turn you down and make it as difficult as possible. I would throw darts at numbers. Like you hit the number 8 . Okay - it may take 8 appeals to get through. They do denials, take a long time to decide and then they lose about 20% of the people applying. Do another round of denials. They loose probably 10% more people. Its just a waiting game and how many times do you have to apply.

 

[Ken S.]

Here in the states I applied once with all the required paperwork and was turned down. I then took the turn down letter with copies of all my medical records from the past 10 years and all the other information SSID asked of me to a lawyer immediately. Roughly 16 months later I saw a judge who could visibly see I was suffering sensory problems and got my disability. Maybe I was lucky in getting a good judge.

 

[Bro'Freak]

Good luck with that it is a nightmare to be honest. I had experience of the system a few years back due to a back issue numbing my leg for over a year. I had a degenerative disk issue, which seems to be fine now but they didn't half make bloody hard. I gave up & ended up getting a job. Back then I was in a relationship with a wonderful lady who was battling the system for acknowledgement of her condition & she went through hell dealing with all the hoops they made her go through. It did cause an imbalance in our relationship due to anxiety levels & getting into character. She won & gained a peace of mind which I hope she still has, as I am no longer in contact I can't say if after all this time she's had more problems with the system.

All I can add is write everything down, think a daily evidence diary for the assessor to read. Get your local CAB to guide & hold your case for the claim. Keep strong internally despite the face you'll be required to wear for the assessments. Take advantage of any courses or group meetings held for people with physical / mental difficulties, as they can count as evidence.

Hope it works out for you.

 

[Ken S.]

It may sound like a bit of a pain in the butt however requesting copies of your doctors visits for your records, Scanning them and storing that information on DVD makes it easy when you have to see a new doctor. I have the past 20 years of mine.

 

[VAW]

They do make it as hard as they possibly can. I remember them asking my son (who doesn't express himself well) how are you? and he said okay. Well according to that statement he is fine! They really didn't take into consideration that Aspie's do not always express themselves well and since they are not an Aspie know how to take their answers. Even though many doctors agree'd on paper that he cannot work a job (but this is mostly because of the U.C. he spent much time in the bathroom and couldn't drive too far etc..and none of the jobs they said he could do were even in this area, and he couldn't do them based on his condition) But to them they said he could do them so he was turned down. I don't think these judges or SSI board knows anything about Aspie's and there for do not take any of that into consideration. It is rather frustrating. However my son is someone of little words, doesn't answer too quickly and never looks anyone in the face. The trouble with people who are used to dealing with their ASD try to hide that they are Aspies and mimic what they see other people doing. There for their true nature is hidden very well but the repercussions of doing that is no one really can feel how it is on the inside or see. Because you can act normal (so called) in public once in a while doesn't mean it doesn't effect you inside or that you can carry on that way every day. MY son has to basically build up to going out. He could go out and you would never know he was an Aspie but on the inside the panic is hard to deal with and also it makes his U.C. even worst because of his anxiety. So hard to relate that to someone who doesn't understand what it does to the inside of you because they cannot actually see it. I wish you the best of luck !!! Maybe instead of trying to explain it to them, show them.... how nervous you get by fidgeting or not being able to answer right away...etc. don't try too hard to talk to them because like you said they won't see it and will think you can keep that up all the time.

 

[unperson]

I was relieved to get it at about 40, but Im glad i was forced into work before that, I would hate having little or no work experience.

What about anxiety meds? Whilst you wait?