Financial Support for Autistic Adults?

WeAreGhosts

nannytone wrote: »

as although we grow up being a little outside the accepted norm, we managed and formed relationships, and had families ...
yet all of a sudden, because there is a diagnosis, there should be a claim

Some of "us" (people with ASD) were failed by professionals (GPs and teachers mainly), so our disability went undiagnosed until adulthood.

Some of us haven't formed relationships or had families and perhaps never will. To some ASD-afflicted people that will be a depressing thought, and others won't care. I still haven't figured out which camp I'm in.

I claim ESA, but mainly for another condition. However, the assessment people took my ASD/dyspraxia diagnosis far more seriously than I thought they would and it showed me just how much it affects my daily life.

I take my hat off to those with ASD who can form relationships and have families and be considered "normal", but for some people that is way beyond their capabilities.

And in the news today - http://www.mirror.co.uk/tv/tv-news/suicide-agony-springwatchs-chris-packham-7865392
Was pretty obvious to me Chris has AS. I have a ASD rader.

GlasweJen

nannytone wrote: »

do you think it should have been disregarded? ( as if you don't have enough other issues, that they also ignored)

i don't know if i am wrong with the way i see it, but i feel my aspergers is more of a personality trait rather than an issue.

some people don't form social relationships because they are painfully shy ... does that make shyness a claimable condition?
( im not being glib ... i'm interested)

Well they didn't so much disregard it as use it as ammo that I'm not as sick as I'm making out. The physiotherapist wrote that I maintained eye contact (I didn't), spoke normally (my mum did most of the talking) and have the social skills to phone a taxi (I use an app, not uber, the local private hire company have an app).

The 2nd decision maker (for the MR) wrote that I didn't exhibit aspergers traits in the exam and that they don't think I qualify on MH grounds for some of the criteria as I am not under a MH specialist and don't take any medication. The main reason for this is that most anxiety meds can't be taken with the meds I take that keep me alive so it's hardly a choice. I do attend counselling and have previously had CBT.


In real terms I'm constantly anxious, I don't fit in but I'm fine with that as I never have. I worry all the time that I've done something wrong; forgot to lock the front door, that someone's left the oven or iron on, that the tank has exploded or the dog walkers lost my dog. My parents drive taxis for a living and I need to leave the room when the traffic report comes on the radio as if there's an accident in the area they work I worry like crazy and I can't use my phone at work.

I check and check and check again that I've taken my meds, I stress when I can't see my box when I want to. I stress that I'm getting medication side effects when I'm probably not, I stress that I'm going to collapse (happens a lot) and that something will happen to me when I'm unconscious (has happened in the past).

It's not enough to have qualified for PIP in its own right but it adds to the picture of why I was claiming.

Now that I've had the "medical" and have read the report generated I can't attend my GP. I'm convinced that they don't believe me, I was diagnosed as being a proxy for my mums munchausens as a teenager and it took a lot of private therapy to have me attend doctors again after it was proved that I was sick and actually would need a transplant. I'm attending cardiology as my cardiologist is new and has made it really clear through actions that he believes me, he's put me on new medication and ordered new tests. If I was under my old "stick to the status quo" cardiologist I wouldn't be attending that either. The rest of them can sing as far as I'm concerned, wrote to GP who wrote back and told me to make an appointment, this is the same guy who hands out Valium like sweeties for people who are scared of going on aeroplanes. In my head it's like he might as well tell them to fly and collect their Valium at their destination.

teddysmum

Surely PIP and DLA are to help people with the extra expense of their disability, so if no significant expense is involved, they won't be entitled. PIP and DLA are not meant as compensation for being unwell, so many unwell people do not qualify.

nannytone_2

GlasweJen wrote: »

Well they didn't so much disregard it as use it as ammo that I'm not as sick as I'm making out. The physiotherapist wrote that I maintained eye contact (I didn't), spoke normally (my mum did most of the talking) and have the social skills to phone a taxi (I use an app, not uber, the local private hire company have an app).

The 2nd decision maker (for the MR) wrote that I didn't exhibit aspergers traits in the exam and that they don't think I qualify on MH grounds for some of the criteria as I am not under a MH specialist and don't take any medication. The main reason for this is that most anxiety meds can't be taken with the meds I take that keep me alive so it's hardly a choice. I do attend counselling and have previously had CBT.


In real terms I'm constantly anxious, I don't fit in but I'm fine with that as I never have. I worry all the time that I've done something wrong; forgot to lock the front door, that someone's left the oven or iron on, that the tank has exploded or the dog walkers lost my dog. My parents drive taxis for a living and I need to leave the room when the traffic report comes on the radio as if there's an accident in the area they work I worry like crazy and I can't use my phone at work.

I check and check and check again that I've taken my meds, I stress when I can't see my box when I want to. I stress that I'm getting medication side effects when I'm probably not, I stress that I'm going to collapse (happens a lot) and that something will happen to me when I'm unconscious (has happened in the past).

It's not enough to have qualified for PIP in its own right but it adds to the picture of why I was claiming.

Now that I've had the "medical" and have read the report generated I can't attend my GP. I'm convinced that they don't believe me, I was diagnosed as being a proxy for my mums munchausens as a teenager and it took a lot of private therapy to have me attend doctors again after it was proved that I was sick and actually would need a transplant. I'm attending cardiology as my cardiologist is new and has made it really clear through actions that he believes me, he's put me on new medication and ordered new tests. If I was under my old "stick to the status quo" cardiologist I wouldn't be attending that either. The rest of them can sing as far as I'm concerned, wrote to GP who wrote back and told me to make an appointment, this is the same guy who hands out Valium like sweeties for people who are scared of going on aeroplanes. In my head it's like he might as well tell them to fly and collect their Valium at their destination.

i can relate tho so much of what you say.
im a checker ( and double checker ) i'm also a 'counter'. i don't know why this makes me feel better, but i know it does.

i never tell anyone about 'the important stuff' I'm not sure why exactly, but if its something really important, i prefer to not say, rather than face the prospect of being let down. so i can comfort myself with the fact that if i'd actually asked, then the answer may have been yes.

i'm totally aware of how nuts that sounds

its a very odd situation when you know you're 'different', and know why you're different, but trying to compensate for that whilst being true to yourself is quite stressful at times.

someone may upset me, but my first thought is to question myself about qwhether it should have upset me or not.

it leads to me being a bit of a pushover ... but one that says it how it is

GlasweJen

I'm a counter, I like things that divide by 7, can't buy anything in quantities of a prime number and my day feels amazing if I have 15 of anything.

I also don't talk about the important stuff, not in real life anyway and part of that is my downfall. I never talk to my doctors about blacking out, why would I when I have a specialist for that?

nannytone_2

i don't really have numbers that i like or dislike.
i just count. steps, cars, letters in names ( i like things that match)it bothered me for years that my parents and siblings all have the same number of letters in their names and i have 1 less
it's like it has to mean something and explain why i'm not like them
and i don't have an 'e' in either of my names, whilst they all do...

but even the fact that i think it annoys me

GlasweJen

I know the feeling. I make words out of letters so number plates, initials, acronyms and things are all made into words and it drives me mad if I can't make a word from the letters. Someone near me has a private plate with JZNP in it and I can't for the life of me make a word from it! I love the private dentists plate though, he has a car advertising his practice and the number plate is 7007H, the fact it's a word and features 7 makes me smile every time I see it.

At work I'm occasionally asked to run visual fields testing if the department is a nurse down and I hate it as I need to make the numbers run in numerical order which rarely happens if you have someone with end stage glaucoma doing the test, it can set me on edge for the rest of the day.

mapleleaf1010

Interesting posts here. Please keep sharing your experience with us. Cheers.

nannytone_2

GlasweJen wrote: »

I know the feeling. I make words out of letters so number plates, initials, acronyms and things are all made into words and it drives me mad if I can't make a word from the letters. Someone near me has a private plate with JZNP in it and I can't for the life of me make a word from it! I love the private dentists plate though, he has a car advertising his practice and the number plate is 7007H, the fact it's a word and features 7 makes me smile every time I see it.

At work I'm occasionally asked to run visual fields testing if the department is a nurse down and I hate it as I need to make the numbers run in numerical order which rarely happens if you have someone with end stage glaucoma doing the test, it can set me on edge for the rest of the day.

oh my word! at last, someone else that does ( did ) the car number p;late thing!

my dad had a green triumph herald when i was about 10 ( although i remember every single number plate he had from the time i was around 4) it was BYT 46H, we had a burgundy anglia that was JLD 642D.

as i got older, i started making them into words.

now I'm lucky if i can identify a colour

kingfisherblue

I've always made words out of car number plates, and so have my children. The youngest is being assessed for Asperger's.