The future of Autisim!

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I agree that as an adult I’m unlikely to get forced to take a cure, but I’ve talked to parents trying to systematically purge their child of having a special interest. Boasting how successful it was at making them more social.

just because you are not the person a cure might be forced upon, i don't think it makes the discussion pointless.

^^^ That reminds me of the famous chess player who said something like "Playing against an inexperienced or stupid player is much more difficult than playing against a chess master or intelligent person. The latter can be counted on to make moves according to a coherent logic, one can predict their moves. The former move without coherent logic, and are thus much harder to predict and defend against."

It is the bane of any rational person to have prepared a detailed argument, only to be stymied when their opponent throws them to the ground with a stunningly irrational response such as "witches did it." Against a rational person, one can prepare one's case concisely and persuasively: one can predict the counter-arguments and rebuttals that will be made. Against an irrational person, the best argument can be completely averted by the numerous side-tracks thrown up in response.

I'll gloss over the insinuation that i'm stupid, but you really think my argument is irrational?

You really think that psychoactive medication does not get given to minors without full consideration of side effects, or just that this is not part of the argument you want to have.

[apologies i took "^^^" too literally]

Last edited by huntedman on 01 Apr 2011, 3:37 pm, edited 1 time in total.

Huntedman: I wasn't talking about you, or your argument.

I don't mean this to be personally offensive, but that sounds like baloney. How do you figure you'd qualify for SSI? Is it because you think that people get SSI because they feel kind of tired or overstressed sometimes, or something, and they don't want to work, and that's pretty much all it takes to get SSI?

No... It takes a goodly amount of manipulation and working of the systems along with good lawyers, advisors and maybe even some money. All this on top of my recent DX and trauma and subsequent "meltdowns" at work resulting in me getting fired and making me suddenly unemployable. etc... etc... The possibilities are endless for someone wishing to do the work. Honestly haven't looked into it in depth but I've yet to meet a "systems" that could not be beat and this one has enough documented cases from people with far less resources than I that I can conclude with confidence that I could do it.

You could probably get SSDI if you proved you couldn't work, but aside from house and car, I think you're not allowed to have more than $2,000 in assets (cash, valuables) to qualify for SSI. It is not a cushy deal. "Mandatory poverty" is a good way to describe it.

I don't understand this statement, if a child is cured when young or before they are born then they become an adult later they are an adult who has had a cure forced upon them are they not?

As always, the less people know about it, the more sure they are they know exactly how it works. It never ends.



It's interesting that your first thought about how a person would get SSI is by cheating the system. Do you believe that that is the primary means by which people get SSI?

And as far as stories and stats, every case of someone cheating the system gets repeated 10,000 times in the media, whereas no cases where someone needed to be SSI/whatever but couldn't because of all the bull**** in the system (due to assumptions like yours, above), ever gets mentioned. But maybe that just means that never happens?

For a more realistic scenario, consider: a person has declining heath which is progressively reducing their ability to work. They go to doctor after doctor, looking for an answer and a cure, but aren't finding either. The doctors are expensive, and as they reduce their work hours they have have less income, to boot. (And maybe they lose their health insurance due to that, also.) Finally, their financial situation gets desperate, and their functionality is still declining despite their greatest efforts, and they can't see how they are not going to end up living on the street in the near future.

At that point, they apply for SSDI/SSI. They don't have "extra" money or time to "work the system," because they're running out of money to live on, fast. And, since the system assumes by default that they are the liars/cheats that you described above, their first application is denied -- not due to lack of merit, but as a standard policy because they're assumed a likely a cheat (and it is assumed will thus be too lazy to re-apply, if so). But, they're not a cheat, and they're still running out of money to live on. So, maybe they get delayed like that for 2 years, and do end up on the street.

To qualify for SSI, you cannot have more than $1500 in assets (with an exemption for one vehicle). You say you make big bucks, and so you probably have big investments. How long would it take to deplete all that? 10 years? A infinite number of years because you can live off the interest? You are in no way even close to qualifying for SSI, despite what you think.

I'm confused. Is this a hypothetical? I thought your employer was accommodating things.

Not only ironic, but more likely than not.

ruveyn

hypothetical. I have no desire to do this. I am well aware of the 2k limits. I could launder my wealth over a period of time. My thoughts are that I could more readily figure out the system than the few who have so far. But it is all hypothetical with no desire to follow up anyway and therefor pointless to actually debate at any level.

That's good. I thought maybe something weird was going down.

As you were

I shouldn't, but what the hell. In regards to the ever-growing mountain of assumption: I never job due to any behavioral stuff, and was always been complimented on my work ethic. My SSDI+SSI was granted on the basis of "neurcardiogenic syncope," dx'ed by via tilt-table test and a cardiologist, and "cognitive disorder: not otherwise specified," diagnosed by a neuropsychologist and social security shrink. That's more than "trauma," or having a bad day, but keep on making assumptions (without realizing it?). It's so much simpler than arguing reality.

(I don't know who has written since I started writing this, it's in response to AIME's observations about the ease and lack thereof of getting SSI. I have a migraine so I can't check the rest of the thread.)

...yeah.

In order to get SSI, I required:

Detailed, detailed, detailed Q&A sorts of statements from several doctors who had known me since I was 13 years old and watched me fail at employment even in sheltered employment programs designed for disabled people, long before I even knew anything about SSI. (Failing meaning just flat-out not being able to even approach competitive employment even when everyone was fine with me and wanted me there.)

Similarly detailed Q&A stuff filled out by my mother. (It was supposed to be filled out by me. I could not fill it out. Not being able to fill out forms that you need to get SSI is a really big cause of people not getting SSI. No, it makes no sense, at least under the assumption that SSI is there for people who can't work, rather than that the SSA tries to deny as many people as possible even when they qualify, often in the hopes that they won't appeal.)

Lots and lots of other forms I wasn't capable of filling out on my own.

A personal interview with me and my mother, mostly done by my mother because I was not capable of following a lot of it. (I honestly was only able to fully pick up one part of it, which is when they wanted my payments to go to my mother, at which point I went "huhwhat wtf?" and they said I could get them on my own. The rest of it was, I could get the feel of what was going on but lost track of the words a lot.)

Stacks, and stacks, and stacks, and stacks, and stacks, of medical records from the aforementioned doctors detailing all kinds of things about me including "functioning level" and all that kind of thing, including GAF levels never exceeding 50ish for years upon years (and usually much lower than that).

I think they also called up my doctors and talked to them (this is from the records I got back from them, it looked like that anyway), but I don't know what happened there because I was not involved.

Getting re-diagnosed with autism by an SSA-appointed doctor who among many other things did a lengthy amount of testing on me, including IQ testing, in which I showed a characteristic pattern of autistic strengths and weaknesses without my knowing what those strengths and weaknesses were or even that it was actually an IQ test.

Lots and lots and lots of questions asked of lots of people about my work history (which was a complete travesty even in my more successful moments working minimum wage at totally random hours at the residential facility I was living at doing manual labor, and then my other successful moment in a job program involved being put into an extremely easy volunteer job because I couldn't do anything competitively employed, even though this was an employment program that was supposed to get people paying jobs).

And I'm sure there was more to it, it was a long time ago.

If you've never had an SSI interview, you also don't know how hellish it is. They go over your every weakness and rub it in your face and require you to talk it out in excruciating detail about everything wrong that's ever happened to you. I'm not the only person I've met who went home from the interview and literally nonstop cried all night and couldn't sleep. It is degrading, it is ugly, it is humiliating, and it is this way even if you are fairly positive about disability. It's just... I can't even describe it, and the idea that there is anything remotely easy about the process (which is way more than the interview) is just mindboggling.

And I am one of the "lucky" ones (if being on SSI/DAC is what's considered lucky). My history was so obvious that I got it on the first try. Most people don't. For most people, it's extremely hard, often involving multiple appeals, even if they totally and completely qualify for it. And to go through that process... I can't even describe how hard it is even if you don't have a problem with being disabled and don't have a problem with the idea of being on disability. It's just... incredibly... difficult. Even if you get it on the first try like I did.

And sometimes even if you do, they'll test you even if your disability is known to be permanent or progressive, just to make sure you still have it. I have this video of a woman who's blind and always going to be blind and they still not only try to make sure she's still blind every few years, but they send her forms to fill out. Yes, even her, they send forms, and they expect her to be able to fill them out, even though she can't read any size of print whatsoever.

Then there's the fact that once you get SSI, you're getting money, and that's good, but in most cases you're not getting enough money to live on easily at all. Even if you do get enough money to live on, you're one tiny little emergency away from it turning into a serious crisis because you have no money to pay for it. And there's a lot more about this that is just not remotely easy or fun or cool, it's hard to even list it all because I've gotten used to it.

If you've worked a long enough time, you're not going to get SSI anyway, you get SSDI, which is a somewhat different program. But it's very difficult even for autistic people who have massively burned out to prove that they need SSDI, because "If you were autistic all along when you were working then what's the problem?" The proof of needing benefits can be as much if not more about your work history than simply proving you have a condition. It's all about your ability to work, and if you can't work then there need to be really good reasons. And yet, even if you have really good reasons, you're not guaranteed to get it. So the idea a person could just decide to and "easily" get it, is... far-fetched. I think it was easier for me than for a lot of people (partly because, although I applied mostly under autism + a physical condition, I have multiple conditions that each individually would qualify me), and it was not at all easy for me (nor is living on disability remotely easy after you finally get approved, which is why most of us on it would waaaay rather be working, contrary to popular stereotype). People who need it are denied every day, so getting approved if you don't need it would be even harder most of the time.

Indeed, the myth of the constant people trying to "cheat the system" goes back long before SSI, into the English Poor Laws. For a good history of that, if anyone is curious, read Why I Burned My Book by Paul Longmore.

http://www.amazon.com/Longmore-Burned-E ... B00081VTE2 (HTML edition, $5.95)

Also available for more money on Kindle, or for even more money in paperback. Paul Longmore was a bona fide historian, as well as a professor who taught about disability history. If curious about the title, he burned his book as part of a public protest after discovering that if he got paid for his work, he would be forced by the state into not having the money he needed to run the ventilator that he needed to breathe at night. That sort of thing is one of the real things keeping people who could otherwise work at least a little, on disability. And despite there now being programs that help people keep Medicaid despite such situations, in order to pay for things they need to keep them alive, most people who need those programs are simply unable to navigate them (as well as in grave danger of the government refusing them life-sustaining medical treatments even if they go by every rule in the book).

For every person who cheats the system (and honestly, a person usually has to be pretty needy in order to want to do that, given the pittance that SSI offers them), there are likely thousands who are in danger of homelessness and death because the system denies them money or services that they utterly and totally need and qualify for. That's because the myth of the rampant cheating is mostly an excuse to "save money" by denying as many people as possible, services. And this again goes back hundreds of years. Even Dickens commented on it frequently in those of his books that dealt with the "poverty relief" systems of the time that he lived in, and his comments were not off-base for modern systems at all. One of the other reasons that SSI, AFDC, and other modern programs are so traumatic to go through is that they're designed to suspect cheating in every single person, every step of the way, when the reality is far different. That's why you need so much documentation.

And yes, that means documentation of poverty as well, for most of them. Moreover, you have to sign forms saying that at any time, they can come to your home and inspect whatever they want to make sure you really are poor enough to qualify, as well as in compliance with other laws. If you refuse the inspections it puts your benefits in jeopardy. On RSDI (what I got when my father retired -- if you were provably disabled prior to the age of... 22 or something... and if you were already on or qualifying for SSI, and then one of your parents dies, retires, or becomes disabled, you get put on or even outright switched to this weird program that acts like almost a hybrid of SSI and SSDI and that is much harder to navigate because even people at the Social Security Administration confuse it with SSDI all the time, so it's hard to learn the rules), I'm allowed a tiny bit more income and assets, but not many in order to keep Medicaid. And I need Medicaid in order to get services. Among other things, this means that if you're on SSI and/or Medicaid, even if you actually end up having the money to save (which is highly unlikely, especially over the long term with emergencies cropping up even if you manage to be in a situation where you're not spending your entire check + in further debt every month) you're not allowed to save much if any of it, because otherwise it puts you over that limit. And belongings count unless they're a few things (including adaptive equipment, which is good because adaptive equipment is mega-expensive even beyond what it costs to build it, because they can bill insurance for that much so they do, which is another reason some disability-related things are more expensive than they ought to be). Mandatory poverty indeed.

The other "fun" things about being on benefits involve what the average person thinks of you. If you appear otherwise able-bodied (to the average person who doesn't know what to look for, anyway), then you'll have people constantly suspecting you of "gaming the system". Even though probably most impairments are "invisible" (to people who don't know what to look for). Even if you do "look disabled", some people will suspect you of it. (And if someone wants to accuse you of it, regardless, they'll find a lot of support because it's such a common viewpoint, much like the "welfare queen" stereotype. And yes, it's that offensive, because among other things of the ridiculous amount of people who die because of this stereotype, either because they are "too proud" to go on benefits, or because they are refused benefits under a system that spends more effort looking for cheaters than they do trying to get benefits to those who need them.)

And nobody needs to tell me that cheaters do in fact exist, I've known a couple. But the way stereotypes work, is that most people only have to know one to assume that it's happening most of the time. Honestly, I've known a couple cheaters and hundreds of people who aren't cheating, but it's the cheaters who stick in people's minds because that's how stereotypes work, even though they're (if they meet people on the system at all) far more likely to meet far more people who are legitimately in the system. Funny how those so many people who are legitimately on SSI, never become the stereotype, even though they're the true majority by far.

Beyond that, they usually think of you as having some kind of cushy lifestyle without having to work. And yet, for most of us who qualify, just getting through the day is equivalent effort and strain on our bodies as a full-time job (or for some of us, overtime job) is for a nondisabled person. And that includes many of us who get services as well. It puts a pretty huge strain on me physically and cognitively to get services all the time, much less to have any part in managing those services. Because there are people in and out of my house (as well as contacting me through the remote surveillance system I use when people are not here, based on systems used in nursing homes, which allows many people who need roommates to live without them) all day. My mom is visiting right now and she says she has no clue how I handle it, she describes it as "like being in the hospital" with the amount of people in and out all the time. (And she has both been in hospitals and worked in hospitals, so she's intimately familiar with the environment.)

Even further, many people who have jobs think it's their right or even their duty to tell you what to do. They act like they own you because their taxes go to your income. Some of them even resent you for it. I actually read a book once in which the author (an autistic guy who had a job) went around giving condescending and paternalistic advice to people on benefits and justified it by the fact that his tax dollars were paying for people's benefits, services, group homes, and the like. And his attitude is far from rare. It's similar to people who sit around judging what kind of food people on food stamps buy (often with no clue of some of the reasons for the choices that poor people have to make about food, although even the fact that people on food stamps usually buy "bad" food for logical reasons shouldn't be necessary to justify the choices made).

Plus you get... comments, for being in various service systems. I can't count the amount of snide remarks I've gotten about that. One very vivid memory I have is of a staff person taking me through a supermarket back when I could actually go to those often without my head imploding, and the cashier made some kind of snippy remark about how many people it takes to make people like me seem "independent" (you could hear the air quotes). You get remarks of that nature all the time, including from people who literally don't think you can understand what they're saying.

Those remarks, plus the remarks from people who think they own you because they pay taxes, wear some people down to the point where they refuse to leave the house for that reason alone. Someone (who wrote one of the articles I'm about to recommend, and mentioned it there too) told me once that one of the reasons some disabled people end up homebound is less a physical limitation and more a severe emotional problem after years upon years of being beaten down by little comments like that. Some people commit suicide over it. If you don't get comments like that all the time, you have no idea what it can do to a person, especially a person less equipped to deal with it. I'm pretty tough and I sometimes avoid places online over the "little comments". (I don't go out much, for non-emotional reasons, so I now less often hear such things from leaving the house.) A nondisabled person of color termed such things "microaggressions". And that's what they are, aggressions, whether people choose to believe they are or not. They're little assaults on the minds and emotions of disadvantaged people of all kinds, and not everyone is tough enough to take it or should have to be. To read more about this in the context of disability:

http://www.raggededgemagazine.com/depar ... 00713.html
http://www.raggededgemagazine.com/depar ... 00801.html

Oh and this board is full of those, which is why I sometimes get tetchy or don't want to come here.