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Verdandi
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28 Feb 2011, 7:15 pm

Fortunately, they work on symptoms, impairments, and the like, although you still need to have diagnoses and records of said diagnoses + treatment to demonstrate they're real.

What is particularly frustrating is being technically eligible for SSDI based on parental social security payments (because of being disabled before 22) but not having any documentation to prove it. I'm hoping school records will be of use for this, but not having been allowed to have practically any treatment as as child or adolescent means that there aren't any medical records beyond check ups, injuries, and so on.

I have no idea how burnout would go over. Since I'm not even sure about bringing it up with anyone as an explicit thing, it may be irrelevant, bureaucratically speaking.



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28 Feb 2011, 7:23 pm

anbuend wrote:
Reading this makes it seem oddly fortunate I burned out so young. By the time I was working age, I not only had no ability to even pretend to myself I'd be able to work, but I had so much documentation of failed work experience even in special-ed-based and similar heavily-assisted employment settings that I got SSI on my first try. Which, while I'd much much rather be working if I could, seems preferable to trying to explain autistic burnout to the SSA at the age of 50 or something and ending up homeless.


A diagnosis of dysautonomia, fibromyalgia, and sjogren's syndrome and a letter from a Rheumatologist stating that I was permamently disabled meant nothing to the Civil Service government disability retirement process. Neither did a letter from an opthamologist stating that I could only look at a computer screen for periods of five minutes at a time. Nor a letter from a psychiatrist indicating the Autism Diagnosis. The only acceptable diagnosis was depression. Not likely that I would have been depressed without all of the other issues, but that was the only reason it was approved.

SSDI considered the combination of these together along with my age and I was approved on the first try with no legal support. One hundred pages of documentation five minutes at a time is the effort that was required. If I didn't have a wife, that needed the support, I don't think I would have been able to complete the process. Probably the biggest reason I am still alive.

None of this would have been possible without good health insurance coverage.

The hardest part for me was saying the words that there is something wrong with me after pretending to be normal for 47 years.



Verdandi
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28 Feb 2011, 7:28 pm

The worst part for me is starting from ground zero since I have a hard time realizing I should ask for help, let alone actually doing it, and not having much documentation at all for treatment of anything that would be seen as disabling. The fact that I have practically no work history, have failed to manage simple things like bills and paperwork, and so on, seems indicative to me.



aghogday
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28 Feb 2011, 7:44 pm

Verdandi wrote:
The worst part for me is starting from ground zero since I have a hard time realizing I should ask for help, let alone actually doing it, and not having much documentation at all for treatment of anything that would be seen as disabling. The fact that I have practically no work history, have failed to manage simple things like bills and paperwork, and so on, seems indicative to me.


The fact that you have little work history and are not able to manage your personal affairs may be enough depending on the diagnosis you are given. The inability to manage personal affairs drops you down in the functional assessment area and indicates a major impairment to daily living. Obviously with little work history you will be applying for SSI and you may depend on a Doctor from Social Security to determine your diagnosis and determine if you are qualified for assistance. It seems like I remember you stating sometime in the past that you had started or were in the stage of starting the process. Have you started it yet?



Verdandi
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28 Feb 2011, 7:50 pm

aghogday wrote:
The fact that you have little work history and are not able to manage your personal affairs may be enough depending on the diagnosis you are given. The inability to manage personal affairs drops you down in the functional assessment area and indicates a major impairment to daily living. Obviously with little work history you will be applying for SSI and you may depend on a Doctor from Social Security to determine your diagnosis and determine if you are qualified for assistance. It seems like I remember you stating sometime in the past that you had started or were in the stage of starting the process. Have you started it yet?


On that scale some of us talked about here a few weeks ago I think I'm at 31-40, which is pretty low.

I am in the process of starting my reconsideration, which is the second round, which will likely also be denied. Then it goes to appeal and hopefully by then I can have some fun stuff like a Vineland II assessment and documented diagnoses, evaluation of my abilities, and treatment on paper.

If I can demonstrate that my disability began before 22, I can also get SSDI. This is a big if, though, although if I am diagnosed with Asperger's Syndrome and ADHD, it's probably a big sign since these are lifelong conditions, and I had academic difficulties all the way through college.

I'm just frustrated by all the paperwork.



aghogday
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28 Feb 2011, 8:07 pm

My wife's brother went through the process using a phone interview. With a diagnosis of Schizophrenia from the SSI doctor, his outcome seemed more certain and was qualified.

Good luck to you. A benefit of SSI over SSDI is immediate medicaid coverage. Normally there is a two year wait for medicare coverage with SSDI, but this may be different for you, since you are trying to establish the condition as a retroactive one before age 22.



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28 Feb 2011, 9:02 pm

I feel pretty burnt out myself.....sure I am going to college at the moment and hoping to get an aparment with my sister and cousin(having second thoughts because I am afraid of pissing them off). But yeah I don't really have any 'goals' in life I have tried to think of goals but I really can't think of a single thing to strive for...other then just getting by until death. I suppose I would like to maybe have an intimate relationship.......but I doubt anyone would really want to spend their life with me unless they are just as burnt out already.

The PTSD could have something to do with this as well, because with the aspergers I have non-existant social skills which has caused a lot of lonlieness and isolation in my life.....but then with the PTSD sometimes I don't even want to be around anyone even though I dislike being alone since I experiances that far too much as a child.



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01 Mar 2011, 10:15 am

They may call it SSDI as a shorthand, but what you get if you were disabled prior to age 22 and qualify for SSI and have a parent who is retired, disabled, or dead, is not SSDI and has a different set of rules than SSDI. It's actually called by several different names. The one I heard most often is disabled adult child benefits. When I get letters from the SSA, they all say "Retirement, Survivors, Disability" on them. Unlike real SSDI, I qualify for both Medicare and Medicaid because it's part of a tiny number of categories "deemed equivalent to SSI for Medicaid purposes regardless of income level". (In the Medicaid manual it's "child's insurance" or something weird like that). It's a weird little category and not a lot of people understand it. The abbreviation I use filling out housing forms is RSDI not SSDI.


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Verdandi
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01 Mar 2011, 1:34 pm

anbuend wrote:
They may call it SSDI as a shorthand, but what you get if you were disabled prior to age 22 and qualify for SSI and have a parent who is retired, disabled, or dead, is not SSDI and has a different set of rules than SSDI. It's actually called by several different names. The one I heard most often is disabled adult child benefits. When I get letters from the SSA, they all say "Retirement, Survivors, Disability" on them. Unlike real SSDI, I qualify for both Medicare and Medicaid because it's part of a tiny number of categories "deemed equivalent to SSI for Medicaid purposes regardless of income level". (In the Medicaid manual it's "child's insurance" or something weird like that). It's a weird little category and not a lot of people understand it. The abbreviation I use filling out housing forms is RSDI not SSDI.


Thank you, I did not know this. The woman at Social Security who talked to me about this just called it SSDI.

Sweetleaf wrote:
I feel pretty burnt out myself.....sure I am going to college at the moment and hoping to get an aparment with my sister and cousin(having second thoughts because I am afraid of pissing them off). But yeah I don't really have any 'goals' in life I have tried to think of goals but I really can't think of a single thing to strive for...other then just getting by until death. I suppose I would like to maybe have an intimate relationship.......but I doubt anyone would really want to spend their life with me unless they are just as burnt out already.

The PTSD could have something to do with this as well, because with the aspergers I have non-existant social skills which has caused a lot of lonlieness and isolation in my life.....but then with the PTSD sometimes I don't even want to be around anyone even though I dislike being alone since I experiances that far too much as a child.


I think other conditions definitely have something to do with it, they can either exacerbate things as they happen or happen as a consequence and exacerbate things because having them is worse than not having them. PTSD can do a real number. That's just a lot of stress to be under. And if it makes you vigilant to threats all the time, that takes a big toll.

In my experience, there are still people who can be interested. It's just a matter of getting to know them (I know, this is not easy). I know PTSD helps make it feel like one doesn't have a future, but it's the PTSD and not the actual future that does this.

I don't mean that as blandly supportive, I mean that really is one of the symptoms.



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16 Apr 2013, 12:58 pm

aghogday wrote:

I wish I had paid more attention to the warning signs throughout my body that I tolerated as well. I kept on telling myself they would go away when the most stressful things in my environment went away. I was largely unaware of my body most of my life; it was screaming stop and I refused to listen. I had no idea that I was losing the mental and physical capability to keep up a social facade. It was what I had done all my life and was the only normal I knew.


This. Completely this. Still recovering from my burnout. I've lost my family, my job, my career, and virtually anything else you could name. What I did gain, though, was me. Not sure what the future holds, but at least I know I will live. And have a life worth living.

Looking for references about burnout, and appreciate all that was posted on this thread. Seriously, are researchers not on this one at all?


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muff
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16 Apr 2013, 5:56 pm

could someone please post the link to the article in a different way? i cannot connect to it as is.



Verdandi
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16 Apr 2013, 6:36 pm

muff wrote:
could someone please post the link to the article in a different way? i cannot connect to it as is.


The site reorganized since this thread was posted. Here's the new link:

http://archive.autistics.org/library/more-autistic.html



muff
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16 Apr 2013, 8:41 pm

Verdandi wrote:
muff wrote:
could someone please post the link to the article in a different way? i cannot connect to it as is.


The site reorganized since this thread was posted. Here's the new link:

http://archive.autistics.org/library/more-autistic.html


thank you!



AinsleyHarte
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16 Apr 2013, 9:10 pm

I had never heard of an autistic burnout until this thread. After reading up on it, I've realized now that the past year or so of my life has been a burnout.

Around the time I turned 23, I had a full-time job as a toddler teacher, a live-in girlfriend, and friends I saw semi-regularly. My job was really hard for me, but the Monday-Friday 9-6 schedule kept me in a routine, and even my classroom of ten 12-24 month children was structured with the same general schedule, so I was capable of keeping up with the demands as long as everything stayed the same.

Well, as I've found, nothing stays the same. Demands at work began to pile up (leading conferences with parents of the children in my class, working in other classrooms, training/helping new teachers, etc) and my boss started to notice that I was buckling. Instead of finding ways to support me, she pushed me harder and became less lenient in how she dealt with me. During this time, my girlfriend told me she no longer wanted the monogamous commitment that she had initiated with me, and wanted to have an open relationship with myself and two other individuals.

Long story short, I started having non-epileptic seizures due to the stress, and POOF! There goes my job and my relationship. I had to move back in with a friend. Now, a year and a half later, I have no other friends aside from the two I've limited to online-only contact, barely speak to my family, and panic at the thought of leaving my house. I stim openly in public, wear headphones wherever I go, don't force myself to do anything that is too overwhelmingly stressful, and... overall just feel "more autistic" than ever.

I know I just wrote a TON and its possibly a little out of place, but this is a huge missing piece that I have been searching for ever since I felt this collapse of "normalcy." I'm so happy I read this.


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21 Apr 2013, 11:40 pm

Thank you for providing the updated link, Verdandi, and thanks for helping to revive this thread. I have been meaning to look for it to help me remember what I wrote, to make an entry in the new blog I have been writing. I thought a link to this general discussion could be very helpful to others, who might not have a link to this website.

I have heard this discussed in other internet avenues, but never discussed as informatively, overall, as in this thread you started. :)


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