Are modern environment getting more and more hostile to ASDs

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Same here! And, frustratingly, just as I hit the "bloom" part of being a "late bloomer", I got struck another blow: I developed a rare neurological circadian rhythm disorder while going through university. So here I am, 43 years old, struggling to finish a degree that I will likely not be able to use because while I've developed enough to maybe, just maybe, *finally* be employable, I now have a second disability (the sleep disorder) that renders me unemployable again anyway. Life's cruel joke.

And I don't think anyone realizes just how hard I have had to struggle to overcome a childhood and adolescence with undiagnosed, untreated asperger's and an EXTREMELY non-supportive environment. I'd have happily traded all that for the "stigma of diagnosis" if it had also meant treatment, assistance, support, appropriate explanations, understanding, assistance in life transitions, etc.



Me too.

Yeah, I almost tried to go back to school this past year (at 40, turned 41), but ended up applying for disability instead. I'm not sure where I'll end up, but I'm hoping I can do something productive in the near future. I just know that a day job is probably right out.

I'm not feeling exceedingly bitter at this point about the past because I spent years and years feeling bitter, and at least now I have a better understanding of that past. I do kind of wish I could have known sooner. And I can't guarantee that not feeling bitter will last.

I got on disability back around 1994 -- YEARS before I knew about my asperger's (I was diagnosed in 2001) but the evidence was strong enough (I had a long string of low-wage jobs, never able to hold on to one for more than two weeks. Several extensive homeless periods interspersed among all the job striving (hard enough to keep a roof over your head on minimum wage, impossible if you keep having to find another minimum wage job every week or so,) years of therapy going back to age 5, and a stay at a mental hospital. Between applying and getting my first check was about two months.

(Although it was the 4th time I had applied for disability. In the past, I hadn't been able to keep enough stability in my life to follow through on an application so they always expired at some point while I was struggling with re-adjusting to homelessness and had no mail or phone and forgot until too late that I had applied for disability because my mind was a bit preoccupied with where my next meal was coming from.)

The decision to try university was due to getting tired of doing nothing productive and realizing that if I was going to spend the rest of my life on SSI, I was going to continue to have zero control over my life, where I live, who I have to live with in order to survive, what sort of noises and smells I would have to put up with in my living space, etc.

But with the sleep disorder and school falling apart now, I'm investigating other ways to earn a living. It suddenly dawned on me (yes, I can be slow sometimes) the other day that I can live pretty comfortably if I even just find a way to make $400-$500 a month because I get to keep most of my SSI that way. The first $100 earning per month is "free" and then I lose half of what I earn per month above that. So if I make $500, I lose $200 of it and increase my base SSI (a little over $600/month) by $300. While six-something is very difficult to live on, I can do nine-something much more comfortably.

In the past, I was always thinking in terms of "I need to get a good paying job because I'm going to lose my disability." Now I'm thinking more along the lines of, "I need to find a job that I can keep and do without a deadly level of stress because it will augment my disability." Because I have to earn something like $1300/month before I will completely lose my disability and other benefits and while a $16K per year and up job isn't that big of a deal for most people, with my sleep disorder I'm really cut off from most mainstream opportunities now.

sorry, that is probably due to our different experiences. my ASD probably got me this far in life (fancy degree and satisfying job) however i grew up in a different country.
from what i see now i am not sure what caused your problems, AS or the cultural setting of US.
did you ever try to live somewhere else?

Sparrowrose, Thank you for that perspective. I hadn't thought of it with regards to work + SSI. I had actually asked someone at DHS (in Oregon) about possible assistance and was told there was no way I could qualify.

I can't really explain why I didn't think disability was available to me. On a superficial level I simply didn't think I was disabled, I blamed myself for everything and just kept trying harder even though I never really got anywhere.

AnotherOne,

Of course we had different experiences, and it is virtually certain that we do not have identical symptoms - and odds are you do not have ADHD while I do. That's rather beside the point. My point was that not having a diagnosis didn't help me at all, and in fact significantly delayed my getting any assistance when I could have used it to, say, continue in college or get and/or keep a job. I have never been nonverbal, and was seen as gifted as a child, to the point that being "gifted" was seen to preclude any disabilities. The end result was that I had no tools to understand my problems or understand that I had disabilities at all. That's what not "labeling" a child does.

And it assumes a lot to say that the only problems are maintaining eye contact or an inability to engage in peer relations. If the actual criteria are met (which are more stringent than this), then there are other problems that may not also be listed that are likely to be present.

Also, I've lived in four different states in the US. Actually living in another country? Beyond my means, as far as that goes. I have a friend who likes to live and work in other countries but she has a financial safety net that I never had, plus the resources to travel.

Last edited by Verdandi on 22 Dec 2010, 12:53 am, edited 1 time in total.

Personaly, I've found the world getting more friendly to me as I grew. As someone who personaly considered the 1990's the dark ages, I simply can't fathom living in a less enlightned time like the 1950's. I would have never been able to achieve half the things I aspire too because I would never have received the accomadations for my various learning disabilites. I was considered very low functning autistic as a toddler and young child, I probably would have been put in an instution and forgotten about.

Unlike Europe where you can practically bicycle to another country, America's impoverished tend not to get the opportunities for travel to other countries.

That's my story exactly! It wasn't until my second time homeless that I started to think in terms of possibly being disabled -- because I knew I was trying hard and have a strong work ethic and wasn't "malingering" or wanting to loaf around on the taxpayer's dime but rather I was seriously struggling and not keeping my head above water for all my efforts.

I really lucked out with the caseworker I got at social security. They looked at my job history and my mental health history and said, "well if you don't know what's wrong with you, let's just pick one of these diagnoses and go with that." Then she explained to me that, in the United States, disability isn't automatically given for a diagnosis but rather it is given for a functioning level. If you aren't functioning adequately in at least one important life aspect -- ex. self-care or employment -- you are considered disabled. Not being able to keep a job or a roof over my head is what qualified me rather than any specific diagnosis. The diagnosis is just part of the bureaucracy and the actual disability is the day-to-day functioning level, if that makes sense.

So she grabbed on "chronic recurrent depression" (I don't even remember which one diagnosed me that. And now that I know the fuller picture, it's obvious that it was situational depression because of the effects of living with my asperger's and how others treated me because of it rather than an organic depression caused by bad genetics or bad brain chemistry or whatever.) and that's what's on my disability paperwork, even though I haven't had a clinical level of depression since I started getting the disability . . . *because* I am getting the disability. The stability it has given my life has majorly improved my quality of life, even if it's still not where I'd like it to be (and my needs and wants are very small. I don't need to be rich to be happy but I'm happier when I'm not living below the poverty threshhold. Which I still am on SSI but wouldn't be if I developed a small supplementary cash flow like I discussed in my earlier post in this thread.)

So am I correct: you're still waiting to hear about whether you will get awarded disability or not? Best wishes! And if you're denied (I'm told most people are ont heir first application) you can get a lawyer who will work for you to get the disability and only charge you a percentage of the first check you get so you don't have to have any money in your pocket to hire her/him in the first place.

Most people's applications take much longer than mine to go through. I had serious extenuating circumstances and I think I got fast-tracked because I was: a. homeless (again) b. pregnant and c. I had to bring a friend or family member to the government evaluator to tell their perspective of my disability and I brought my mother and she is a doctoral psychologist (Psy.d) so I'm pretty sure her word held a lot more weight with the evaluators than a layman parent's testimony might have.

I haven't filed the application yet. I got onto Washington's Disability Lifeline program (and the budget for that was cut only three days after I received notification my benefits were approved). However, I'll remain on the program until I get approval for SSI. I have an appointment to meet someone who will help me with my SSI application after Christmas. I did get an evaluation for the DL benefits, at which point I was diagnosed with PTSD and determined to be unable to work. I am not entirely sure about the PTSD diagnosis as the symptoms I have at this point feel relatively mild, and I think that AS and ADHD as well as the comorbid (atypical) depression cause me a lot more trouble. I don't feel depressed at all right now (and haven't for nearly two weeks) and I am still having the same difficulties I always have, but without the anhedonia and suicidal ideation.

I do know about lawyers and appeals - I researched the process while trying to decide between going back to school and SSI, although I appreciate any and every hint given. Thank you.

It's a shame the budget got cut! That sounds like a great program and one I've not noticed in many other states. Good thing you managed to get in before they cut it!



One thing I've learned from my own application process is not to quibble too much about *why* you are disabled. If the system wants to put a different label on you and it isn't hurting you and you know that you truly are disabled and need that assistance, just let it go. The fact that DL determined you disabled an dunable to work is a big "leg up" in your application process -- you are very fortunate to have that!

And I totally understand where you're coming from when you say the depression symptoms have lessened since you've started getting help! That happened for me, too. All the other issues -- my executive dysfunction, my mild dyspraxia, the bad reactions people have to me no matter how hard I try to fit in and not offend -- are still there, but the crushing, debilitating depression has lifted (though I still have big problems when I get sleep deprived, which is why I'm thinking I'm not going to make it through my degree because the sleep disorder guarantees sleep deprivation so long as I'm keeping a regular schedule.)



Oh, good. I know that some people don't realize they can get a lawyer -- I'm glad you are cued in to how the system works. And doubly-glad that it sounds like you've got an agency (the DL folks) helping you out with the application stuff. Very awesome! I'd say contact me if you need anything or have questions but it sounds like you're in really good hands. You can still contact me if you want or need to anyway.

It does my heart good to see someone else who's spent years slipping through the cracks finally getting the help they need. You made my day. Seriously. Best wishes with the rest of the process!

Yeah, DL was cut so I think payments are dropping by $100 a month. I don't know if people are getting axed from the program at all, but the cuts were pretty deep either way.

I don't really intend to quibble as to the why of my diagnosis, but a part of me appreciates sheer accuracy over fudging.

What happened with my depression symptoms wasn't quite like that, but yeah, this is the third time this year that mine have lessened after assistance or new information helped me move forward. Someone suggested to me that I might have SAD, but I think the past two weeks sort of disproves that theory.

I'm glad your day was made. I appreciate everything you've said.