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jayjayuk
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17 Apr 2014, 10:28 am

skibum wrote:
No, it's not worth it. And credits only last for 9 years so I would have to start all over from the beginning and there is no way that I would go through college again without help and without an official diagnosis they won't give me help.


Regarding your last post. So, you could get a diagnosis now but be left in $2000 debt? I'd go with the debt, although would that void your insurance policy for any future illness? I'm in the UK so we don't have health insurance, we have the NHS and get this stuff for free. I've never understood the health care system in some places, like the USA. If people pay tax shouldn't that cover health care? That's probably one for the "politics" forum though,



skibum
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17 Apr 2014, 10:34 am

jayjayuk wrote:
skibum wrote:
No, it's not worth it. And credits only last for 9 years so I would have to start all over from the beginning and there is no way that I would go through college again without help and without an official diagnosis they won't give me help.


Regarding your last post. So, you could get a diagnosis now but be left in $2000 debt? I'd go with the debt, although would that void your insurance policy for any future illness? I'm in the UK so we don't have health insurance, we have the NHS and get this stuff for free. I've never understood the health care system in some places, like the USA. If people pay tax shouldn't that cover health care? That's probably one for the "politics" forum though,
The debt would not be worth it for us in the US if we are over the age of 18. Unlike in the UK, if we are diagnosed after the age of 18 we are not eligible for any services. There are private organizations that are willing to help however they can but they are geared mostly towards helping children, parents of Spectrum children, or LFA's. There is almost nothing available for HFA adults. And if you are over the age of 18 government sponsored services will not help you at all. You don't qualify because of age. So the only thing that would happen is that I would be paying the bill and my life would not change at all except that I would be able to participate as a Special Olympic Athlete because in the US HFA;s are allowed and encouraged in SO. But other than that I would get no more help than I do now and I would just be paying $2000.00 to find out what I already know about myself.

Whether or not it would change my insurance policy, I don't actually know. It could change it for the worse if it did change it, It would not change it for the better.

And our taxes don't cover much here, at least not that I can see.


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Aristophanes
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17 Apr 2014, 10:42 am

I got diagnosed 2 weeks ago @ age 33.

My diagnosis was bizarre though, I had a meltdown a decade ago and was sent to a state run mental institution because the police were involved. Apparently they had diagnosed me with Asperger's then, but since I wasn't a client, but a ward of the state, they decided not to notify me, nor my family of the diagnosis. So for a decade I believed I was just bi-polar (original diagnosis @ 14) and a complete social f**k-up. Of course a few weeks ago I had another meltdown and got to go to a private institution were they diagnosed me with Asperger's-- I signed a release at the new institution and they notified me that the previous institution had diagnosed me with Asperger's as well.

So yeah I've been dealing with the same issues all the other posters have, but also the anger of not being notified of my original diagnosis way back in '04. Not that a diagnosis changes anything, except as another poster mentioned: perception.

Perception is huge though. I can be content that my mind just works differently, it's much less frustrating that constantly trying, failing, and not understanding why-- in effect beating your head against the door to get it to open and then having someone tell you, oh it's been filled with concrete on the other side and can't open.



michael517
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17 Apr 2014, 10:53 am

Welcome to the forum!

I self-diagnosed in the summer of 2013, and I'm still trying to sort it out in my mind, all the 'stuff' that has happened in my life.

The two biggest questions in my mind are,
- If I get an official diagnosis, will I regret it? I regretted the day I got an official asthma diagnosis, I had difficulties in obtaining health insurance when the company I worked for ceased to exist (no company, no COBRA). How do you think I voted in the last presidential election?
- How come they were not screening the children in the "Channels of Challenge" group at my daughter's grade school for Autism/Asperger's, and should I make an issue of it?

I can understand how I would have been missed if I was born in 1963.



Aristophanes
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17 Apr 2014, 11:29 am

michael517 wrote:
How do you think I voted in the last presidential election?

Right there is the difference between me knowing my diagnosis this time and spending a decade in the dark.

Not to get this post too side-tracked, but I'd recommend you not getting diagnosed if living in the states. There's absolutely no benefits for a diagnosis that I know of and a ton of possible downside (the privatized insurance system being profit driven and all).



Lnb1771
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17 Apr 2014, 12:21 pm

skibum wrote:
I remember the year you 29er's were born. Autism Spectrum was not known at that time. It was until that year, in 1985, that people, as in the general public, started to learn about Autism on a little wider scale when Sylvester Stallone's second son Seargeoh was diagnosed and it made national headlines. It was the very first time I had ever heard of Autism and there was no Spectrum then. I remember reading the article about him in I think it was People Magazine or some magazine like that. He was six years old. I even remember where I was and what I was wearing when I read it. I was a huge Rocky/Sly fan and I was so interested by this article.

Then in 1988 with the movie Rainman, which I saw in the theaters, thank you very much :D, Autism became more of a household name. But Asperger's and Autism Spectrum were not really known publicly yet so if you were mild in your symptoms or if you were a girl and did not present like a classic boy, you would have most likely been missed. I don't know when the Autism Spectrum came into play or when Asperger's started to get more widely known and more readily diagnosed but it was not until pretty recently. So the fact that your parents did not know or you were not found out when you little is not really that surprising. And when I was little all of our Aspie and Misophonic symptoms, I have Misophonia also, were basically just treated as bad behavior.


This post made me think of my situation. I was diagnosed in 1975 through a series of events that consisted of my uncle nagging my mom that something was wrong with me developmentally. Then my mom watched the Mike Douglas show that featured an autistic child. She recognized those behaviors in me. Next she went to an autism society meeting where she was put in touch with Laura Schriebman. Next thing you know, I am placed in the Lovaas study and was deemed "indistinguishable from her peers" by age six. Although it's unlikely that I my behaviors now would get me a diagnosis, I was under the impress that once autistic, always autistic. It's just that my challenges are more subtle now. They can come out more when I'm under stress such as hungry or sleep deprived. I have trouble with processing spoken language. I mishear things a lot, especially music lyrics. I also can't talk to someone on the phone and quickly switch over to talking to someone in person. I get all confused and jumbled up. I'm not a big fan of the telephone for that reason.
Anyway, that's enough about me.



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17 Apr 2014, 1:03 pm

skibum wrote:
But other than that I would get no more help than I do now and I would just be paying $2000.00 to find out what I already know about myself.

Whether or not it would change my insurance policy, I don't actually know. It could change it for the worse if it did change it, It would not change it for the better.

Even being in Canada, our systems covers NOTHING for adult HFAs unless they are chronically unemployed or have a criminal record. I'm basically punished for coping too well and even the various psychologists have advised me NOT to pay for a diagnosis because the only consequence would be a potential increase in insurance premiums for being 'diseased'. No thanks! That's literally all a diagnosis would be: $1000 to tell me what I already know. I can think of much more important things to spend that money on like rent or food. Apparently, once you turn I believe 22 you suddenly don't have Aspergers, just like magic!

Like I have relayed before, I laughed at people who said insurance would go up but my car insurance went up 50% because they found out I lived with my parents a few years back and considered that "high risk". If I kept my mouth shut, I would have never had that happen since nobody else drives my car. Never ever doubt the twisted logic of lawyers! Still would have been nice to know as a teenager especially given how hated I was by peers but at this stage there is zero benefit.



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17 Apr 2014, 1:35 pm

LNB: Do you have any memory of when you were in the Lovaas study? I've read lots about that study--that the participants were in intensive ABA. Was it a bad experience for you?



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17 Apr 2014, 1:38 pm

SkiBum: I understand what you mean. My father also quite college just before he graduated. He never even told me he went to college! I just found out when I was in my 40's.



jayjayuk
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17 Apr 2014, 1:59 pm

It's an awful situation in the USA. In the UK we get support. If we are unable to work we receive money each week, get our rent paid for and get all the help one needs. I get £171 a week and get my rent paid which is £550 because I've been unable to work for 3 months due to sever anxiety and depression.

How does it work in the USA if you're unable to work, do they at least have a welfare system in place for those that are finding working difficult at certain points in life?

It seems a bit backward, because surely they should provide some free health care to those with AS or any mental disorder, to help them cope in life so they can work, and contribute towards taxes and the economy. Maybe there's no financial benefit in them doing that.



skibum
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17 Apr 2014, 10:53 pm

We do have a welfare system but I don't know too much about it. A lot of people end up homeless and living on the street and in homeless shelters which are limited and some end up in prison. I remember trying to get food stamps once and I was told that I would have to go to job training to get it. It was so stupid. I had to stop working because I could not work. So to ask me to go to job training for some minimum wage job just to get food stamps was ridiculous.


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Lnb1771
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18 Apr 2014, 1:18 pm

kraftiekortie wrote:
LNB: Do you have any memory of when you were in the Lovaas study? I've read lots about that study--that the participants were in intensive ABA. Was it a bad experience for you?


I do not remember much, but I do have my mom's notes (she was a parent/therapist) and some audio recordings. It was intensive (40 hours/week) ABA.
Thanks for asking!