GP's Reaction to me asking for a referral...

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A certainty and an affirmation that I could not provide objectively.
I knew for sure, subjectively - too many life-long questions to ignore were answered in detail by AS, but I still needed that 'official stamp'.

Documentation for my SSI application that, yes, is based on measured impairments, but it seems like they like to have diagnoses and records of treatment to support those impairments. I hope spending two decades trying and failing to support myself qualifies me to claim that I can't work. (not directed at Cornflake).

I also like to have independent verification.

You cannot work in the jobs you have been in, does not mean you cannot do any work at all. The fact is you would not have lived this long if you were not able to do ANY work at all. Sure it is harder to be on the spectrum, but the idea that there is not one single job out there anywhere at all that you could do, that a job could not be modified for you, etc is simply wrong. I am relatively low functioning. I am non verbal, I cannot live alone, I cannot cook, clean, wear most clothes, go out alone, etc. And yet I can tell you I am out there looking for work, going for job interviews and the like. I have no intention of sitting back and doing nothing my whole life, and when I see people who function a thousand times better than me asking for a handout, because jobs have been hard, I simpy cannot understand it. It has taken me a long time to find a suitable employment service to assist me and to work out what I can do, and what modifications and support I will require on the job. There are very few jobs I can do, and I will need a great deal of support, but the fact is I can work and if I can then you sure as hell can. I can understand wanting some proof for yourself to explain what your struggles are, but this wanting of government benefits, I cannot and will not understand. There are unemployment benefits and you can apply for them, while you look for suitable work, work out what your issues are, etc. but instead you seem to want a handout, and much of this comes from people who are married or have been in relationships, have tavelled, etc, etc. These are things I will never be able to do.

Instead of looking at what is wrong with you, why don't you look at what is right. You can see a glass as half full or half empty. You can use your specail interests to your benfit, use your ability to be away from people to your benfit. And it is these things that I am focussing on. I focus on what I can do, not what I can't do. I am now 37. I was diagnosed at age 3 and told I would be ret*d for life. No one offered me any of the specail therapies or the like that are currenlty out there for children, but I made it through and life is hard, but I intend to make what I can off it, instead of asking for some hand out based on a diagnosis and no proof at all of not being able to function independently.

You know what, though? I don't have the energy to hunt down a workplace and a job that can be adapted to my needs. It's actually stretching the limits of what I can currently manage to take care of home responsibilities and manage my own health care (which I would not have at all if I had not applied for disability assistance).

These aren't handouts. They're supposed to help people who cannot work survive without living on the streets starving. It is true I am not in that position in that I have assistance from family to keep me afloat. The fact is that I would not have lived this long if I did not have relatives who were willing to help me during the 15 out of the past 16 years that I have not been able to work. I have two years of work experience going back 20 years, and two-thirds of that work experience I did have barely paid for anything at all. One third of it actually cost me more than I made because I had to take cabs home from work due to lack of public transportation and an unwillingness from my housemates to provide transportation - and while I really dislike my housemates from that time, I'm not going to say that it was unfair of them to not give me a ride home at 2 am every day.

I trust you to determine what works best for you, I'm not really concerned or fussed about what you think should or is supposed to work for me. It may be that in many ways you are more functional than I am in day to day life despite the fact that I am verbal and have never been considered intellectually disabled. Neither of us can really know that (although I guess it's easy to make assumptions either way). What I do know is that after spending years sending out resumes and going to job interviews without ever getting a single job, and the fact that I hit sensory overload quickly whenever I go anywhere, I'm willing to just say, "I need assistance." That applies to me and no one else - everyone gets to make their own decisions. I do think it's kind of cold to insist that anyone who has demonstrated difficulties getting and holding jobs (as in literal years between jobs) adjust as if they have the same capacity for coping, working, and even getting work as you do.

SSI is not a handout. It exists precisely for people like me, assuming I can get approved. It has actual opportunity costs - limits on my resources and savings, for example - that guarantee that even with social security income I will remain below poverty level. This is not some kind of exploitable gravy train. It's at best additional resources to give me the tools necessary to at least keep my life under some kind of control.

It also doesn't mean I can't ever do any work (although the amount of work I can do is limited by rules governing SSI). Mostly, it means that I won't starve if other - less formal - assistance falls through.

You also assume a lot to think that I only look at what is wrong with me. I actually do consider that a lot of things are right about me, and I am actually happier than I have been in a significantly long time because of these things. You are wrong about no proof of not being able to function independently. I have two decades of empirical proof just from my own lifespan. I'm glad you're able to do it, I am glad for anyone who is able to do it. I tried my hardest to do it for half my lifespan and it just didn't work out. However, what didn't work out for me isn't about you, just as what did work out for you isn't about me.

My worth has nothing to do with how much I manage to contribute to the workforce.

Well, I haven't done those things either and likely never will. But I don't want my heartbreak in life to be a reason to curtail my sympathies for others' difficulties. (Especially if I don't really, truly know their situation. It's always easy to imagine someone else's situation incorrectly.)

If someone can manage work for 10 or 20 years, that doesn't automatically mean it's been smooth sailing the whole time. I've seen people on this board mention having worked for decades -- and also being intermittently homeless. Some might have hung on for a long time because it's not too hard for them, but others might only because they've got 1 really strong finger (to hang on by).

I've been through the SSDI/SSI application process (which is probably easier than applying for SSI alone), and they don't make it easy. It's actually deliberately made hard, so that any slackers who are in fact looking for an easy handout will give up. I.e. they reject most first applications -- not because the person doesn't qualify, but to make sure that those who reapply are truly desperate (and if you end up homeless due to the delay, that's just tough luck in the USA). So, I personally don't see how there are really people wanting a handout from SSI, because it doesn't seem to exist that way.

Hypothetically, I could work a bit, if an employer was willing to put up with a randomly fluctuating schedule where I wouldn't be able to perform most of the time. -- The point being, I remember someone telling me that as far as SSDI/SSI goes the requirement is being able to work at jobs that actually exist (and that you can reasonably get to, and so forth). Hypothetical jobs don't count.

Right.

In the past week, I've gone to bed at any time from 11 pm to 7 am, and slept anywhere from four hours to 10 hours. I've also on every single day slept at least 1-2 more hours regardless of how much sleep I got during the day. And some of those naps came upon me when I was trying to enjoy my hobby, which is to say doing something I enjoy is wearing me out.

I eat very few foods, I cannot touch most foods, and hence cannot prepare food, I cannot clean, cannot cope with any loud noises, wear ear plugs permanently just to walk out the front door and I cannot go out alone. I have no living relatives and was on my own from the age of 16. At present I get a total of 3 hours of paid support per week and I cannot live with other people, as I cannot handle their noise, just normal household noise. I will never work more than a few hours a week.

The main reason I raised this issue though is that everyone that has said it has been diagnosed with mental illnesses, why are they not getting you the benefits you need, why does the Aspergers diagnosis in and of itself mean so much more to you. If you can't function, does it matter what the hell they call it?? And if you need help then go out and get help. What I see is people here asking for pensions and the like, but no help for anything else at all, and that is what I do not understand. If you really struggle then you would be out there searching for help and not just pensions. That is why the US wants to know what treatment and the like you have recieved and why the pension systems in the UK and Australia are changing so that we actually give people the help they need instead of just handing them money. How does handing someone money help them to live, to be part of the community, to have a full and happy life. The fact is people do not simply need money, what they need is practical assistance so that the parts of their conditions that do impact on them are supported, and they can go out and be part of the world.

The other simple reality is that in most countries there are hundreds of different payments, not just those for the disabled and yet all I see are people interested in nothing more than getting on disability payments. If you need income support I dont' doubt that at all, but why the need for one specific payment, and why do you not ever want to do anything else at all, ever?? I mean we get a sickness benfit for up to 3 months and have that payment basically indefiantly on the simple presentation of any doctors certificate for 3 months, but it is not paid at the same level as the disability pension. We have a few hundred people on this payment, and yet even people applying for the disability pension here do not apply for that?? All they want is the pension and nothing else and that is when I have a problem. I have no problem at all with income support, I have a problem with people who honestly do not want to ever move on in life and if your life is so affected by your condition the fact is you would be out there searching for help and support, as well as income support.

The UK is planning on getting 80% of people off the disability pension there, by simply offering them more support, asking them do participate and do things, etc, etc. And the fact is the vast majority of them can do things, and should be supported to do more. They will still get income support, but it will not be on the basis of doing nothing at all, it will on the basis that they actually make an effort to participate in the community and to find suitable work and they will be supported to find that suitable work. Yet most people don't want that, and that is what I cannot understand.

"All you see" is what people are posting on this forum. I am seeking diagnoses and treatment for every condition I have, and an ASD is not precisely the linchpin for justifying my impairment (although it does explain my sensory issues which are debilitating and thus relevant). I am searching for help which includes SSI/SSDI. I have actually been diagnosed with mental illnesses I do not have in the process of trying to get on disability, and now I need to get diagnoses for the conditions I do have that explain the conditions I do have, and properly rule out the mental illnesses I do not have.

Another thing is in the US you require documentation of your conditions, their symptoms, how disabling they are, and medical treatment you're receiving. Given that there is no medical treatment for ASDs, I think it's kind of important to make that clear on my application for SSI benefits.

I've been keeping up with the austerity measures in the UK, and I do not agree that it is the positive force you describe it as. It's throwing people who really are unable to work off of benefits, and forcing them into working to survive when such work will likely aggravate their disabilities and lead to exhaustion, depression, and other difficulties.

While I will not argue that practical assistance is a bad thing - and would certainly be preferable for practical assistance that made it possible to work at a job that matches my abilities and make enough money to live on, this isn't the world I live in. My option for assistance is getting SSI/SSDI and accessing necessary medical care, which also means - as I said in an earlier post - being restricted in multiple ways that are not to my advantage.



There are only two options for income support for me: The disability payments I receive right now, which are well below what I need to live on, and disability payments from the federal government, which are closer to what I need to live on but likely still insufficient. I can't receive both payments at the same time. If there were more options, I would probably take advantage of them, although I am disinclined to trying to push myself into working when working consistently fails for me.



The UK is planning on finding any reason possible to get people who need those pensions off those pensions to save money. This is not a grand humanitarian effort to make people "productive" (as if productivity defines a person's worth as a human being*), it's an austerity measure intended to save money for the government at a human cost.

* productivity does not define a person's worth as a human being.

I can't speak for anyone else, but the basis of my disability claim was cognitive impairment and a heart condition. I consider myself lucky to have had the cardio-thing; it was much easier to get that recognized than it would've been to get my actual primary problems recognized, believed, and understood. And, I can't imagine someone being taken seriously by SSA without a diagnosis of something. You have to prove your case, which means appealing to authority (there is really no other way), and that means a doctor's diagnoses.

As far as seeking help, I went broke spending money on doctors (about 15 of them) over ten years, without any of them coming up with anything that was substantially helpful. On my own (and from some books & people) I've worked out ways to deal with executive dysfunction and working memory problems, but even if employed maximally they don't give a 'normalizing' boost to my functioning.

So, I have sought help, and have done and do my bit to come up with strategies to function better on my own. But all that in no way 'fixes everything up'; it just lets me live my very simple life without continuously being so fried that I'm continually losing (or get stuck at a low-level of) functionality and/or getting physically ill.

I suspect people don't mention all the looking for help they did if it didn't result in anything helpful (which is probably why they're looking at the "next step"). I think it can be a false assumption to assume that people haven't looked. And for ASD adults, it doesn't seem like there is much specific help or treatment, anyway.

As far as the 3 month sickness time-off thing, all I can say is that there was never such a thing at any job I ever had (in the USA). When things were getting very bad, I requested reduced hours of my last employer, and they refused. I ended up passing out in the parking lot twice, which lead me to quit. They no interest in listening, accommodating, anything (and neither did any other employer). If they'd let me have reduced hours maybe it wouldn't have had to end like that, but I don't think their actions/attitude is uncommon amongst American employers.

As far as the 80% of people being removed in the UK... I suspect there is some ugly ideology and politics there that have little to do with the stated reasons. "Shock Doctrine" (a book) stuff.

Over half of the people currently on disability payments in the US, UK and Australia and most other western countries are on there for mental illnesses. At present in Australia when you are released from a psychiatric hospital, for as little a stay as 2 days you are presented with fully filled out and completed disability claim forms for you to lodge. I am well aware of how disabling mental illnesses can be, but I am also fully aware that people can recover from them, and I hardly see that telling someone who has been unwell for a few days that they will never be able to do anything for life is helpful for them.

You are the one deciding that the mental illnesses you have been diagnosed with are wrong, and in the process telling them what you do have. Sure doctors make mistakes, but I have a problem with anyone who simply says I cannot possibly have those conditions, and I will not stop until I get someone to diagnose me with this condition. What happens if and it looks like it could be in the next decade that brain scans come in to diagnose ASD, and you end up not having it. What will happen then.

Any of these conditions are on a spectrum and some people are more severely affected than others and it ranges from profound autism at one end, to NT at the other. It is in many regards the exact same thing as intelligence. If you have an IQ of lower than 70 you are classified as intellectually disabled, have an IQ of 71 and you miss out no questions asked. The fact is the same thing happens with ASD. There are people who do have issues of ASD that are not going to meet diagnostic criteria, because they are simply not as severly affected.

While I agree there are likely to be issues with how the UK will implement the system, the fact is it does not have to be about forcing people to work full time. It can simply be about encourgaing people to be a part of the community in any way possible, to give back something, anything at all for the benefits they do recieve. And the fact is the VAST majority of people on disability payments are capable of doing SOME work. I do not for a second mean that these people can work full time in any job at all, that they will never require help and support at work, etc, etc. But there is work out there, and we need to be encouraging people to do what they can do and at present the fact is we are not. Why not encourage them to do some voluntary work. Is it not possible for you to sit in a quiet room one on one with a elementary school child and listen to them read for half an hour a week. Is it not possible to water some plants for an elderly person down the road, once or twice a week??

The fact is at present the world is not and does not accommodate ASD, not because it can't but because no one is asking them do. I have just heard of the first cinema here offering what they describe as a ASD screening once a week. They are having different lighting, lowering the sound, and making sure nothing else is on at the time, taking away some of the visual stimuli when entering, etc, etc. If we accommodate and are mandating things to be put in place for the blind, Deaf and physically disabled, why are we as people on the spectrum, simply sitting back and not asking for the same things. The fact is I want to be part of the world, I do not wish to sit back and do nothing. I want to be able to go out and be a part of it, and with help and support and creative ways of working around things I am slowly managing to do those things. I am now doing 2 hours a week of voluntary work and I am proud of what I do and should be, and for once feel as though I can in some way give back for the money, supports and services that are offered to me. The fact is there are things that people can do and rather than looking at what you can't do, and that does not mean that getting income support is wrong, it means that as well as doing that, that you also look at what can be done to improve your life, to make the community more accessible to those on the spectrum, because the fact is there are any number of millions of things that can help us to be part of the community, to do things in the community, to do some form of paid or voluntary work and the like. And I do have a problem when the rest of the disability communtiy is out there trying to do these things and people on the spectrum and with mental health conditions are doing the absolute opposite. And why are the numbers of us on benefits increasing, the numbers with mental illnesses increasing, etc, etc. The fact is we can and do support SOME of these people to live and work full lives in the community, full in terms of what they are capable of, not full in terms of other peoples capability. THere are people with profound intellectual disabibilites working in open employment, running their own businesses and the fact is if they can do it, we can too. Sure we cannot do it alone, anymore than they can, but with creativity and support we can. The fact is that employers cannot support us as needed unless we ask them and we cannot do that unless we can come up with concrete ways to support people in the workplace and there are thousands of different examples out there of what can and has been done. It does not mean you can do it now, but to say its not possible ever is something I will totally disagree with. The world cannot be accessible to us, if we do not ask them to make it accessible for us.

What I said here is simply "I do not have these conditions" and you have decided that I am telling my therapist what I do and do not have. My therapist has the list of diagnoses I was given by the psychiatrist at DSHS. She has what I was diagnosed with at the intake screening, which was not the same list (although it overlaps). She asked me if I had ADHD during the first appointment, at which point I told her that I think I have both that and Asperger's Syndrome. In the time since, she has told me several ways in which she sees signs of "high functioning autism" with me, and I haven't gone over nearly the amount of information I have that supports the idea that I have an ASD, because I am not even trying to focus on that - I am simply trying to discuss matters that need attention, and she's sharing her observations with me. If she did not believe I had an ASD, I would certainly be putting more effort into discussing the matter with her because I believe I do, but that does not seem to be the case.

The condition I do not have is one I have discussed with her, and she says she has seen no signs of it. Further, I do not have a personal history that is indicative of this condition, nor do I display more than two of the symptoms to any clinical level - and one of the symptoms simply does not even match up with the expected clinical presentation.

I am not pursuing a particular diagnosis to the ends of the Earth, and although I realize many diagnosticians don't really know ASDs well enough to diagnose, as I understand it, the psych I will see has experience with adult autistic clients, and knows what to look for.

I don't think the brain scan question is relevant, unless the brain scan itself has no false negatives or false positives. Something that may be available in the future doesn't impact my needs at this time. If some future test suggests I am not autistic, I would have to question the equipment used or the test itself, or I guess determine which other condition present since early childhood with exactly the same set of symptoms as autism that I might have.

Why are you so insistent against getting a diagnosis? You seem to be saying there's no reason to get one. Honestly, I don't understand anyone on this forum who makes it their business whether or not anyone else seeks a diagnosis, makes a self-diagnosis, or both. It seems intrusive and pointless to me.

But anyway, I'm not making assumptions about what you do when you're not posting in this forum. I am trying to restrict myself to what I see in your posts. I would at least appreciate the same courtesy - not to be told that I'm just deciding that I don't have some conditions and do have others, that I'm telling doctors what I really have vs. what I don't really have, that I have not sought any assistance aside from going straight to disability assistance, that because I am going for disability assistance that this means I am doing nothing else with my life. None of these are accurate, yet I seem to recall every one of these statements being made in our discussion. If you think I might be doing something, I am more than happy to answer questions, but I am not willing to have someone else set the discussion in terms of what they think I am doing or thinking.

And the UK stuff has nothing to do with involving disabled people in the community. It's about saving money. It's an austerity measure not a "help disabled people" measure. If anything, these cuts to housing and benefits will make it more difficult for many disabled people to be involved in the community because they will end up homeless and quite hungry. The situation exists not because disabled people are too self-involved to participate in community, but because when it's time to cut spending, disabled people are expendable.

I've actually had a rather different experience with GPs. I went in and talked to mine and explained that I thought I had Aspergers (though possibly was just under what is actually diagnosible) and explained why. She said that she didn't have the knowledge to diagnose me but would be fine sending me to someone who could. We decided not to because I can't see that formal diagnosis would help me much and I think I might not fit the DSM criteria well enough and because it would involve multiple long trips to a major city that would end up being really expensive.

Maybe I would have not had her believe me if we hadn't just been through my getting diagnosed with fibromyalgia which is another one of those awkward diagnoses. Just wanted to say that not all GPs are close-minded.

And that's exactly right, unfortunately.
The 'public gloss' put on this thing is efficiency and money-saving but the far-reaching effects will be terrible for people with any disability.

As it is, support for any form of Autism heading towards HFA in adults does not exist, and it seems to me that one side effect of these measures will be more people who are dangerously close to burning out already, and are already being mis-diagnosed and mis-treated for depression - will simply crash and burn horribly if they're 'assisted' (a BS term for 'forced', really) back into the workplace.

To say that no services exist for those with HFA in the UK is not true. The UK like many other places is all about WHERE you live, rather than what condition you have. I know of people who moved from Australia to specific parts of the UK specifically for that purpose and the same exists here. We have people who get 15 hours a week of support from one council, move to another area and get 5 hours a month.

The UK is looking at implementing cuts that have already been made in Australia to benefits and I do know of people who have actually benefited from them, and who are now part of the community in ways they would not have been before, if the cuts had not been made. They were released from a short stay in a psych hospital being told they could never do anything at all and with all the paperwork for disability. They were given partial incapacity, which means they had to look for work of part time nature of up to 15 hours per week. They were sent to an employment service that supports only those with mental illnesses and over a period of time was first introduced to some part time voluntary work and then some study/training and is now working, part time in a field they love. They still recieve part benefits, they still have support from the employment service and will have for life. What do they get from being told they can never ever do anything for life, to sit at home and not do anything and how is it that they are now successfullly working in a job they love, with support if they cannot do that.

The fact is that disability does not always have to cost money. A person with a profound intellectual disability, that cannot talk, is not contient and cannot do anything, except for walk, now runs a full time business, that supports him to have full time around the clock carers and to live in his own home. HOW. Simple, he has a business that involves waiting!! People who are working, have something wrong at home and need a plumber or whatever to fix it, they can't be there to wait for them, so they pay this person to do so. Sure he has a carer with him, but the carer's wages are paid for from the business income, as is the income for his carer's to be with him overngiht and the like. We think of disability as people needing to be given things, when in fact in many cases that is simply not the case. You just need to look at what you or they can do and work from there. People with a mild intellectual disability cannot live totally alone without support and often want someone to live with who is not disabled. In return for some simply moral support and being there, we have college students, young couples or the like live there rent free. They are not doing much at all, the person functions at the level of about a 15 year old, but does need some competent adult at times around. And they get to save money, etc. Do these people really need paid staff out visiting them, etc, etc. The fact is there are thousands of ways in which disability does not need to cost money, but we have been made to think of it as costing money. It is about looking at what is already out there, and about what the person can do, and not what they cannot do. One of the hours of support I get is from a volunteer, I live in a bad area for support, but I also feel that I give back by volunteering myself. Disability is exactly what you make it. If you want to be DISabled by it, you will be, if you want to live and be part of the world you will be, with or without PAID support.

This was not about anyone in particular just trying to suggest that people see things in a different light. The glass is not always half empty, sometimes it is infact half full, but if is up to you to look at things in that light. You can see the changes in the UK as something that may help you, or you can see them as something that may disadvantage you, only you decide how you want to see those changes. From what I see support is being redirected to different areas and that threatens people, it means change and people do not like change. Perhaps the new types of support will actually be a benefit to you, but when you have a one sided view of what support actually means of what you actually want, etc then you cannot see things in that way. Where is the evidence that says that no one with autism can work, that no one with depression can work, etc, etc. The fact is people with all sorts of conditions can and do work, but it seems easier to see them as imcompetent people who need our pity and sympathy, rather than simply giving them a hand up to find their place in the world. Whether the changes in the UK will achieve that or not seems totally irrelevant to many people as they seem to very much want to keep these people as total victims and tell them they cannot do anything at all.

The other reality is that some people may want to try something and it may not work out for them. Is that really bad. The fact is every single person on the planet makes mistakes it is how we learn. None of us would have ever learnt to walk without making mistakes, as we all had to fall over and get back up again first. But when it comes to the mentally ill or disabled, we for some reason need to stop them making mistakes, WHY?? What is so wrong with them finding it was too hard and deciding to try something different next time. The rest of the world is allowed to do it, why not them?? A person with a mild intellectual disability, is 25, drives, etc. Goes for his first job interview, gets the job, it involves driving 30 minutes each way, and starting at 5 am. His parents decide he cannot possibly do that, he might fall asleep at the wheel of the car. Anyone can fall asleep at the wheel of the car. Would the average parent stop the average 25 year old doing that, no, but because he has an incredibly mild intellectual disability, he's told he cannot do that. And it is the WHOLE disability community that does it. We do not allow disabled people to make mistakes, we act incredibly paternalistic and tell them that it is for their own good to be wrapped in cotton wool and to not do anything at all.

As for getting a diagnosis. I never said it should not be done, I said that a person needs to consider what the needs for it were. If it was simply to have someone say, I have this condition then do you really want to go to the time, expense, travel, etc, etc for that. That was all I initially raised, as people were saying that GP's were not supportive and I also said to simply go and get a second opinion if warranted. The fact is as another poster has already said there are GP's out there who are supportive and if one fails, go and see another. I have been told on this list that in the UK you can go and see any GP you like, so simply go and book an appointment at the next clinic, how hard is that if the diagnosis is important to you??

I'm curious to know what type and level of support was received in the UK, specifically for HFA in adults.