Disabled and Non-disabled

[OkRad]

I am very perplexed by the wide scope of functionality in the Spectrum. I have an uncle who has Aspergers and is a genius. PhD at like 25 or something (back in the 50s in England. It was a hard PhD and he slid right on through!). He is married, kids, and is awesome.

Then there is me.......can hardly feed myself and cannot function very well.

I am concerned because if they just lump us all as Aspies, you know how stupid NTs can be (sorry, I love NTs but they do stuff to us that I oppose). And I am afraid they will start to say to NONFUNCTIONAL Aspies, "You are fine. You are perfectly OK"

They are doing this in a place I lived, where Aspies where just written off when it came to care.

WOuld it not make more sense to have a third category of nonfuntional autistics of any kind? Instead of all this "Funtional Apsie, disabled aspie, nondisabled autie, disabled autie." The only safe category is diabled classic autie because they will not say"Get off your a** and work, like that other guy!" WHich is sad because maybe they can do a better job than "that other guy"

It gives me a headache and makes me always wonder when they pull the rug out.

 

[xudo]

I know what you mean. I've always been pretty functional, because I've had to be. I've had problems all through my life, but I'd never seen anyone or had any diagnoses until adult life, so the help that could have benefited me was never offered.

Now I'm 30 and the thought of working fills me with abject horror. I did work for a short time after uni, but then I suffered a back injury and had surgery. I was classed as "unfit to work" after that, and now the DWP seem to have forgotten about me. I was originally seen in 2009, and then was reassessed in around 2012 and supposedly as they bring in universal credit, I'll be seen again "eventually". I think they're not too bothered because they aren't actually giving me anything. They pay my NI contributions and that's it, because when I was originally classed unfit, I hadn't paid enough NI to get incapacity benefit and I wasn't eligible for DLA. I have no idea if I would be eligible for PIP as it now is and to be honest I'm reluctant to even try because of how difficult they make it for even the most disabled of people to claim in the hopes they won't have to pay anything. Now incapacity doesn't exist, I would have to try to claim ESA, and I haven't because I'm terrified that they would put me into the work based activity category and basically force me to get a job.

It doesn't help of course that my anxiety has only gotten worse, and I've become less functional, especially out there in the big old NT world.

 

[Nitro]

I am very perplexed by the wide scope of functionality in the Spectrum. I have an uncle who has Aspergers and is a genius. PhD at like 25 or something (back in the 50s in England. It was a hard PhD and he slid right on through!). He is married, kids, and is awesome.

Then there is me.......can hardly feed myself and cannot function very well.

I am concerned because if they just lump us all as Aspies, you know how stupid NTs can be (sorry, I love NTs but they do stuff to us that I oppose). And I am afraid they will start to say to NONFUNCTIONAL Aspies, "You are fine. You are perfectly OK"

They are doing this in a place I lived, where Aspies where just written off when it came to care.

WOuld it not make more sense to have a third category of nonfuntional autistics of any kind? Instead of all this "Funtional Apsie, disabled aspie, nondisabled autie, disabled autie." The only safe category is diabled classic autie because they will not say"Get off your a** and work, like that other guy!" WHich is sad because maybe they can do a better job than "that other guy"

It gives me a headache and makes me always wonder when they pull the rug out.

Don't you think they use too many labels already? Who gets to decide who is who,if it isn't already confusing enough. I have been on this forum for quite a while,and I see flaws in using the term high functioning,because there are many here that I would consider far less.

Every human being,either neurotypical or on the autism spectrum has deficits,but can you really sort them all out and place them into tiny little compartments?

As a former employer,I always asked the questions I needed to know in order to decide who got the job and who was sent packing.If you came to me requesting employment and showed me up front that you had deficits that could hinder your performance doing my tasks,then no,I would tell you to move along. There is where having a label will hurt some in gaining employment.

I get what you are saying,but at the same time feel it is necessary to observe all sides of an issue so the outcome can be more readily predicted.

 

[OkRad]

I am just concerned that they are doing that- taking people who cannot work and telling them they can! If they know autism is not curable why are they toying with people?

 

[xudo]

I am just concerned that they are doing that- taking people who cannot work and telling them they can!

With the tory government, this won't change any time soon.

 

[toothless]

I am very perplexed by the wide scope of functionality in the Spectrum. I have an uncle who has Aspergers and is a genius. PhD at like 25 or something (back in the 50s in England. It was a hard PhD and he slid right on through!). He is married, kids, and is awesome.

Then there is me.......can hardly feed myself and cannot function very well.

I am concerned because if they just lump us all as Aspies, you know how stupid NTs can be (sorry, I love NTs but they do stuff to us that I oppose). And I am afraid they will start to say to NONFUNCTIONAL Aspies, "You are fine. You are perfectly OK"

They are doing this in a place I lived, where Aspies where just written off when it came to care.

WOuld it not make more sense to have a third category of nonfuntional autistics of any kind? Instead of all this "Funtional Apsie, disabled aspie, nondisabled autie, disabled autie." The only safe category is diabled classic autie because they will not say"Get off your a** and work, like that other guy!" WHich is sad because maybe they can do a better job than "that other guy"

It gives me a headache and makes me always wonder when they pull the rug out.

i dont think there is such thing as a non functional aspie,nor autie.
let me explain...i think people with aspergers-more so the adults of today were brought up with high expectations from society and were not supported with independant living skills nor supported with special needs or sensory issues- BECAUSE there was no label.
i think there are many aspies out there who could otherwise function better if they were given the support,but of course with aspies being classed as intellectually high functioning they are assumed to be high functioning in all areas which is ******** as everyone in society should know.
HOWEVER,i believe with older aspies,it might be to late to be suddenly bestowed with this amazing invisible support that in reality never happens-to function better as behaviors and ways of life are so ingrained into a autist and on top of that so many of us really just hate change.
so for those aspies who are older and struggling with functioning, they are not non functional as that would imply they lack the capacity to function at all-they do not lack the capacity they simply were not given the right level of support-if any to prepare for being an adult in an NT world;they have been let down by society.

i would personally call this type of aspie;a significantly disabled aspie-disabled by the social model of disability,i wouldnt bother with functional labels as low refers to classical autism and high usually gives an image of an aspie who is able to navigate the world with no autism specific support as an adult.
the disabled aspie may be considered severely disabled for legal or benefits purposes,so you could always use that term if it applies to you.

i hope i do not offend you okrad.

 

[OkRad]

No, you did not offend me. I agree. It is that they do not help people who need help who need that help to function.

HFA means you did not get help and you are right, it's too late. You cannot make that person be able to work by forcing them. That is why there are so many autisitc suicides they are finding. We can't just suddenly be forced to work.

People think if you are hungry enough you can work. No, if you are too hungry and hopeless and cannot work you kill yourself.

 

[xudo]

i think there are many aspies out there who could otherwise function better if they were given the support,but of course with aspies being classed as intellectually high functioning they are assumed to be high functioning in all areas which is ******** as everyone in society should know.
HOWEVER,i believe with older aspies,it might be to late to be suddenly bestowed with this amazing invisible support that in reality never happens-to function better as behaviors and ways of life are so ingrained into a autist and on top of that so many of us really just hate change.
so for those aspies who are older and struggling with functioning, they are not non functional as that would imply they lack the capacity to function at all-they do not lack the capacity they simply were not given the right level of support-if any to prepare for being an adult in an NT world;they have been let down by society.

For me personally, you've absolutely hit the nail on the head. My parents especially don't really agree with my diagnosis and they see that I have no problems at all. This is partly because they ignore a lot of stuff, and partly because I've always hidden stuff or not told them because of how I know they would react (or not). My Dad essentially made fun of my tics when I was in high school, because they annoyed him and he thought I was doing them on purpose. Needless to say that this hasn't really made me that interested or able to point out that actually, I have a lot of difficulties. It probably also doesn't help that I did well academically, so they see that and think "well she's obviously fine".

 

[Nitro]

i dont think there is such thing as a non functional aspie,nor autie.
let me explain...i think people with aspergers-more so the adults of today were brought up with high expectations from society and were not supported with independant living skills nor supported with special needs or sensory issues- BECAUSE there was no label.
i think there are many aspies out there who could otherwise function better if they were given the support,but of course with aspies being classed as intellectually high functioning they are assumed to be high functioning in all areas which is ******** as everyone in society should know.
HOWEVER,i believe with older aspies,it might be to late to be suddenly bestowed with this amazing invisible support that in reality never happens-to function better as behaviors and ways of life are so ingrained into a autist and on top of that so many of us really just hate change.
so for those aspies who are older and struggling with functioning, they are not non functional as that would imply they lack the capacity to function at all-they do not lack the capacity they simply were not given the right level of support-if any to prepare for being an adult in an NT world;they have been let down by society.

i would personally call this type of aspie;a significantly disabled aspie-disabled by the social model of disability,i wouldnt bother with functional labels as low refers to classical autism and high usually gives an image of an aspie who is able to navigate the world with no autism specific support as an adult.
the disabled aspie may be considered severely disabled for legal or benefits purposes,so you could always use that term if it applies to you.

i hope i do not offend you okrad.

I can agree with you on some points here,but where do you determine the cut off areas? Who gets to do it,a room full of shrinks that can't all get on the same page that didn't get it right the first time?

 

[toothless]

For me personally, you've absolutely hit the nail on the head. My parents especially don't really agree with my diagnosis and they see that I have no problems at all. This is partly because they ignore a lot of stuff, and partly because I've always hidden stuff or not told them because of how I know they would react (or not). My Dad essentially made fun of my tics when I was in high school, because they annoyed him and he thought I was doing them on purpose. Needless to say that this hasn't really made me that interested or able to point out that actually, I have a lot of difficulties. It probably also doesn't help that I did well academically, so they see that and think "well she's obviously fine".

i can understand xudo,thats a all to common and highly frustrating experience to have,family should support you but all of us on here are from a time when any form of autism was not understood or not even recognised and aspies in particular have been especially let down by society,i see the autistic children of today get so many forms of therapy and support especially in their transition into adulthood and i wonder how different it would be for all of us adults if only we had had the same support?
im surprised our governments dont fund the different positive autism therapies for adults;such as sensory integration therapy or social skills therapy or independant living skills training, as it could make a big difference in someones life-plus for the government it might even mean an autistic can actually get a paid job instead of being stuck on useless low dead end benefits and make their stupid targets to get people off benefits look good.

my uncle who is an aspie struggles greatly with functioning now,he is in his 60s and has a farm,its an absolute mess all falling down but he still manages to treat his animals like his babies,he cant look after himself.
my sister who is also aspie is very academic and instead of supporting her my mum and my mums family practically disowned her and called her stuck up and arrogant as she has a complex vocabulary,had major social anxiety and wasnt very socially apropriate.

 

[toothless]

No, you did not offend me. I agree. It is that they do not help people who need help who need that help to function.

HFA means you did not get help and you are right, it's too late. You cannot make that person be able to work by forcing them. That is why there are so many autisitc suicides they are finding. We can't just suddenly be forced to work.

People think if you are hungry enough you can work. No, if you are too hungry and hopeless and cannot work you kill yourself.

i totally agree okrad, i think the national autistic society and any other positive autism socieites in the world need to be campaigning for better treatment of adult autistics as it seems to be all about the children,adults are forgotten and abandoned.

aspies in the UK only seem to get support when they have a severe mental illness that affects their mental capacity such as bipolar,schizophrenia, severe depression etc,the government have let down a lot of people who could have otherwise been the valued workers of today.
there isnt enough done to stop autists getting to crisis point.

as for auties,well...we get 'support' but for me personally my autism is so complex that no one in the team understands me or my behaviors and difficulties so im currently going through a long behavioral and mental health crisis thanks to them and the intellectual disability team in social services have had to make a new behavioral 'relapse and prevention plan' to stop me getting sectioned or put in respite care again.

im going to get a mini library in my lounge of autism books for staff to read,ive lent my other classic autism books out like thinking in pictures and the reason i jump, and never got them back and whats worse those particular staff had said they never started on them yet when i asked.

 

[toothless]

I can agree with you on some points here,but where do you determine the cut off areas? Who gets to do it,a room full of shrinks that can't all get on the same page that didn't get it right the first time?

Nitro ,im not sure what you mean-the cut off areas for what?
sorry im a bit confused.

 

[Nitro]

Nitro ,im not sure what you mean-the cut off areas for what?
sorry im a bit confused.

Who gets to decide who is too screwed up to work...
The governments or groups of "pros"?

 

[Nitro]

All I see is more subjective decisions to be made and still see some left on the outside looking in

 

[Mr Allen]

What gets me though, is the fact I've been doing voluntary work for Donkey's years, yet I've been told by Government Doctors just over a year ago that I can't work! How's that work? If I can do voluntary work, then is it not obvious that I could work in some capacity? I mean yeah OK physically I can't work 40 hours a week, but a part time position in a not too busy Shop in Town would suit me, and I could do with the loot, I'm only Rich by name ya know.

 

[toothless]

Who gets to decide who is too screwed up to work...
The governments or groups of "pros"?

oh...sorry,i get you now!
i think experienced pyschologists should work with the government to label aspies,auties or anyone with any level of disability,but speaking of the UK-to do this they use a group of awful wannabe doctors who have no clue about anything that gets to complex for their untrained minds to understand,they only know generic stuff like 'bad back' , 'depression', 'amputee' etc.

i wish they would use people on the spectrum to assess people on the spectrum, we are more knowledgeable than a lot of specialists,i once typed a letter of support for my cousin who has high functioning classic autism, and i went through his entire behaviors and difficulties in autism terminology; as i knew him and i was thanked by his doctor for helping understand my cousin and he said its as if an autism specialist had wrote it.
autism is my special interest like so many of us,and we should be used to help other autists.

 

[Bolletje]

This is an interesting topic. When I was first diagnosed, my shrink suggested I should get myself classified as unfit to work due to disability, so I could get financial aid from the government and help finding a fitting job.
This completely disregarded the fact that, at that point, I had almost finished my medical degree and had my PhD application ready to submit for the moment I obtained my master's degree. My psychiatrist reasoned that I had struggled to keep up with normal life so far, and life would probably be a lot easier if I didn't have to struggle anymore and could find a nice and quiet job with government allowance.
I was offended by this suggestion, because while I have been struggling all my life, I've also made it pretty far. My parents and family still don't even acknowledge my diagnose because I'm "doing too well".
Going on disability (in my country at least) also means not being able to finish my studies even if I wanted to, and trouble applying for a regular job. Not even counting the fact that I would throw 8 years of studying in a field I'm passionate about out the window. And I'm not even going to get started on student loans...

For me, some aspects of my Aspergers can be a pretty big disadvantage, but I wouldn't consider myself disabled. My monumental severe depression and anxiety before I was diagnosed was the disabling part. Having solved that (for now, and hopefully, forever) I'm quite able to cope on my own, most days.

It's ****** though, that most people think of Aspergers in terms of hyperintelligent technological wizards with dazzling sets of skills (not me) while completely disregarding the huge variety of people that have this diagnosis.

 

[Bolletje]

What gets me though, is the fact I've been doing voluntary work for Donkey's years, yet I've been told by Government Doctors just over a year ago that I can't work! How's that work? If I can do voluntary work, then is it not obvious that I could work in some capacity? I mean yeah OK physically I can't work 40 hours a week, but a part time position in a not too busy Shop in Town would suit me, and I could do with the loot, I'm only Rich by name ya know.

Now that's just nonsensical. In which country do you live?

 

[toothless]

What gets me though, is the fact I've been doing voluntary work for Donkey's years, yet I've been told by Government Doctors just over a year ago that I can't work! How's that work? If I can do voluntary work, then is it not obvious that I could work in some capacity? I mean yeah OK physically I can't work 40 hours a week, but a part time position in a not too busy Shop in Town would suit me, and I could do with the loot, I'm only Rich by name ya know.

you are being judged by how you present or how you phone/write to the shop probably so your autism and quite possibly your age coupled with your lack of paid work history may play a part in this and it shows how discriminatory the working world can be,autists traditionally struggle with interviews if they get that far [i think in the UK they have to give an interview to people who tick the disabled box].
ive heard sainsburys is pretty good for hiring autistic and/or intellectually disabled people, have you tried them? i dont know how true that is but one of my support staff used to work for them in manchester and told me it was a regular thing in her sainsburys.
my sister is aspie and she got a part time job with ASDA although she has a good work history so that can help.

 

[Nitro]

oh...sorry,i get you now!
i think experienced pyschologists should work with the government to label aspies,auties or anyone with any level of disability,but speaking of the UK-to do this they use a group of awful wannabe doctors who have no clue about anything that gets to complex for their untrained minds to understand,they only know generic stuff like 'bad back' , 'depression', 'amputee' etc.

i wish they would use people on the spectrum to assess people on the spectrum, we are more knowledgeable than a lot of specialists,i once typed a letter of support for my cousin who has high functioning classic autism, and i went through his entire behaviors and difficulties in autism terminology; as i knew him and i was thanked by his doctor for helping understand my cousin and he said its as if an autism specialist had wrote it.
autism is my special interest like so many of us,and we should be used to help other autists.

Experienced psychologists still work with guessing games,and I wouldn't want my government meddling in such types of affairs to begin with.