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How has being diagnosed with AS impacted your life?

Discussion in 'General Autism Discussion' started by IanOSU, Sep 11, 2015.

  1. IanOSU

    IanOSU Member

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    I'm curious to know, since you were diagnosed with AS, what has changed in your life?

    I have just been diagnosed, and my doctor suggested weekly therapy sessions. other than that my life have not changed in anyway. all I know now is that therapy is a good start for change.
     
  2. NiceCupOfTea

    NiceCupOfTea Active Member

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    Nothing really.

    I was diagnosed about 14 months ago. I had some follow-up care from the autism clinic, but that ended months ago. I can't afford therapy, so that's not an option, but I do feel like talking to somebody on a weekly basis would be helpful. Especially as, at the moment, I barely have any human contact with anyone except my parents - and they're not ideal for so many reasons. I feel completely adrift and lost in life.

    Yes, I have more "insight" into why I am the way I am, but I am starting to think that insight by itself is utterly useless. It's even more useless when nobody else around you shares the same knowledge, so they have no understanding of why you are the way you are - in some ways, it's even more isolating than if you'd never had the insight in the first place.
     
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  3. King_Oni

    King_Oni Well-Known Member V.I.P Member

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    I think overall... my life went downhill ever since, however, I don't think it's fair to attribute it to my diagnosis exclusively. In fact; I think if I didn't have a diagnosis it would've went downhill even faster...

    Understanding why I do what I do is great on a personal level; however, hearing "it is what it is and there are no services geared towards individuals when it comes to employment" (and to boot, on a national level; unless you're a textbook case of ASD) doesn't really make up for a good outlook on the future.

    If I even look why I got my diagnosis; it went from dropping out of uni, applying for welfare while depressed, going through the mental healthcare system and ending up with an autism diagnosis because my therapist thought that, with a formal diagnosis you at least have a viable shot for disability income as he would never consider me an asset to the regular jobmarket (well, him and the dozen of other therapists I've seen in my life). 4 years later; still on welfare... and granted that I've been laid off from some obligations because they don't consider it viable for me to look for a job through regular methods. Let's just say; my financial situation is volatile, but in a sense I'm less stressed out mentally because I'm not going out on job hunt every day solely based on viability and my diagnosis I would suspect. If that were to change; things would get really interesting mentally... I'm sure.

    That all said; how has it impacted my life.... I guess I'm at this weird point in life where I just missed out of government plans because of law changes and so on and it's hard to attribute my situation to my diagnosis solely.
     
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  4. IanOSU

    IanOSU Member

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    I see. I'm pretty isolated too, gets lonely really fast.
     
  5. IanOSU

    IanOSU Member

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    now do you live in the US? and which state? I'm pretty disappointed to see so little resources for adults with aspergers. my feeling is that the system is broken in a way that aspergers lies in the grey area especially for adults. but, with children with ASD raising so much awareness in the past few years I'm hopeful for aspie adults. still some serious advocacy has to be done.
     
  6. King_Oni

    King_Oni Well-Known Member V.I.P Member

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    I don't live in the US; I'm from continental Europe.

    But yeah, ASD in general lies in a grey area in the western world (I'm not even going to touch 3rd world and anything in between on that topic).

    As much as I believe there could and should be some good advocacy I seriously doubt it will put a dent in government plans that are all based on cutting back support for the sake of saving on the most vulnerable.
     
  7. IanOSU

    IanOSU Member

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    what I see is that aspies has been getting lots of attention through media, like the show Big Bang Theory. or a famous aspie like Temple Grandin or Susan Boyle. celebrities revealed that they have aspergers like Clay Marzo, Daryl Hannah.

    Also austism rights movement led by Ari Ne'eman and Michelle Dawson.

    unfortunately government has always been historically a decade late on mental health issues. that's why advocacy is so important
     
    Last edited: Sep 11, 2015
  8. King_Oni

    King_Oni Well-Known Member V.I.P Member

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    The big issue I see with all these people on the spectrum and how media portrays them is that they already accomplished something. Yes, it might be through some support (or even supportive family). They're not a blank slate, trying to go somewhere in life at a, what some might consider, "late" stage in life.

    I'm quite sure there are many on the spectrum out there who have great talents but aren't in the best environment to make good use out of it. And while I don't think it's fair to treat us like we're special and put on a pedestal; the support that actually works for an individual, as opposed to a basic approach, is totally absent. Heck; the last time I saw a therapist, the sessions ended with them saying "I'm sorry, we acknowledge you need support, but we can't offer this here, good luck in the future"... and this was at a clinic that specializes in autism in my area... go figure.
     
  9. IanOSU

    IanOSU Member

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    yeah my take is to find a therapist that I actually like. whether they specialize in ASD isn't a priority for me. customising my support system tailored to my needs is the ultimate goal.
     
  10. King_Oni

    King_Oni Well-Known Member V.I.P Member

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    If only it worked that easy everywhere.

    Granted, I do have some freedom to find someone, but most here work for bigger clinics, and the ones that don't might not be covered by healthcare here (and in a country that has "mandatory" healthcare; mandatory as in, you have to be insured, but you have to pay the bill yourself; it's often tricky, let alone you'll end up on waitinglists; last time I was at a therapist I was on a 15 month waitinglist).

    Someone on this forum; and I don't know who it was exactly anymore, told me something along the lines of "you're employing them for your issues, not the other way around". It's quite true I guess and in that I think you should find someone with whom you connect.

    The issue, at least here is, even if healthcare is covering it, they only cover a X-amount of sessions (an arbitrary amount applied nationally) and you should be good to go again; that's not how healthcare should work. In fact, we've gotten to the point where a psychologist has to figure out what your issue is within 5 sessions of 45 minutes and if neccesary refer you to a specialist; no wonder people go undiagnosed. Back when I was seeing someone years ago (and the amount of sessions was higher) I'd taken more than 5 to get comfortable with the guy before we started talking about my issues.

    And then there's the notion that everything has to have an almost physical endresult. I told my last therapist, i'd be happy to come over once a month for a talk to make sure the situation I'm in is contained somewhat and I keep a bit of a good grasp of my sanity. However, she told me that, the higher ups, couldn't agree to such a "treatment" as they, pretty much want to put someone in an actual therapy program (which has little to do with personalized care, but think more like group therapy for people with autism; the irony!) and if neccesary push some pills on them. I mean, +1 for transparency on her behalf, but if that's how mental healthcare works in some places... it's not weird so many people struggle in life.

    Being on the spectrum (but surely, just like many other illnesses, be it mental of physical) is getting down to bureaucracy and legal issues and is far, far removed from medical treatment in general. (but I've ranted about this somewhere else already)
     
  11. ancusmitis

    ancusmitis Well-Known Member

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    It never did me anything good. It let them put me on all these kinds of drugs. Maybe it didn't enable them to send me to that special school or put me in that special classroom, but if it did I certainly wish I could have avoided that. Both these places were terribly physically abusive. My parents finally got me out of there and into a mainstream classroom, but it was an uphill battle the entire way and the schools were always trying to put me back no matter how I was doing. I finally spent the latter half of my teens and my early twenties self-destructing in order to get away from my earlier traumatic experiences. I never experienced any of the range of benefits of people who "finally" got diagnosed late in life. Those experiences seem so strange and foreign to me. For me the autism label has been nothing but an excuse to put me in places that were completely inappropriate for my intelligence and level of study. I'm basically in hiding now, and I wish I could have started out that way. I might have avoided some experiences that had a significant negative impact on my mental health. I might be more advanced in my education. I might have pursued more creative endeavors, and at earlier times when learning those skills would have been the most fruitful. As it is, I am playing catch-up on things like drawing and creative writing, and hoping like hell that it's not too late. Most of the things I've pursued so far have been passive studying, like foreign languages, or just completely idiosyncratic.
     
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  12. IanOSU

    IanOSU Member

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    I can never wrap my head around the idea of getting healthcare through insurance companies. the fact that the insirance companies, hospitals, and medical supply industry is making huge porfit from sick people is so evil. there is actually an executive in every healthcare provider called the charge master. basically they decide how much to charge for each services they provide. because of this, there is no metrics for pricing in healthcare. when was the last time your hospital bill makes sense? an MRI costs 500usd? no it doesnt. it costs no where close to 500usd to perform an MRI. here in Taiwan we have universal healthcare for all citizens. you are free to choose any health provider and switch anytime you want. your medical record is put in a universal system that can be access from all doctors once they have your consent so no confusion when switching doctors. and the cost of monthly appointment with my psychiatrist and meds? 25usd a month.
     
  13. IanOSU

    IanOSU Member

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    now was that in the US? did your school not provide you with special assistance and individualized academic program? public grade school is required to provide all that by law in the US. This was extended from the Americans with Disabilities Act signed into law 25 years ago.
     
  14. King_Oni

    King_Oni Well-Known Member V.I.P Member

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    We have plenty of what you describe going on here as well; however ever since the government decided to privatize healthcare it actually put a lot of services going up in price and down in quality. I still spend about €75/$85 (after a government refund is already deducted) on mandatory healthcare monthly and if I wasn't unemployed, I'd end up with a mandatory €375/$425 "own risk" fee I'd have to pay out of my own pocket anually before healthcare actually kicks in to help out with bills.

    Here's a hilarious shocker of a bill I had 2 years ago;

    I saw a therapist, as a result of a psych evaluation by the government to see if I was fit to work. The result of that evaluation was "seek help and get your stuff sorted out" (heck, do they know it's not that easy). I went to the same clinic that diagnosed me 2 years earlier. Before any kind of therapy could start, they'd had to conduct an interview, as is their policy. I saw the psychologist who diagnosed and caught up what went on the past 2 years. I was out in 30 minutes. Their policy stated I had to see a psychiatrist, whom I saw for about 30 minutes and I had a 20 minute consultation about their findings of the interview.

    3 months later I got the bill, for about 80 minutes of conversation for an intake interview to see if they could be of any service to begin with. €495/$560 which comes down to an obscene hourly rate to begin with (roughly 400 an hour) and they even told me to find help elsewhere since they couldn't do anything for me. Because of that "own risk fee" I ended up paying over half the bill myself, making up for about half my monthly income... yeah, it's that crooked, even in "first world countries".
     
  15. Aspieistj

    Aspieistj Well-Known Member

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    I spent far too much of my life believing I was bad until I learned the truth when I was in my 60s. I was about to retire from my second successful career (teaching, then nursing) so I was in no place to hope to get any kind of assistance. I would be terribly pleased if I received some increased level of understanding and acceptance. Most people, when told, just blew me off saying I couldn't possibly be on the spectrum. If I had know when I was still quite young, and had some intelligent counseling, I think I could have learned how to better "fit in" though that would have meant only that I did well faking being myself. I was born in the '40s when Asperger was publishing rather odd theories. I don't really recall any common discussion of AS until I was just starting out in my second career and an RN, in the '70s.. The most I heard about the problem was "refrigerator mothers" and at that time I was still in complete denial that my mother was anything but a saint. A few years later, she died and after a while I went through the discovery and realization of admitting to myself that my mother had always abused me emotionally. I still didn't know much about AS. I was in my 40s when I heard Oliver Sacks describe prosopagnosia and realized I definitely was face blind. I found a form for FB people that was very tolerant of discussion of other problems and decided that many face blind people were also on the Autism Spectrum. Light bulb!!!! I realized I was an Aspie and began to really learn about my odd behaviors and feelings. I believe that having the very emotional difficulty of being face blind, along with a late realization of my Aspie status made me very unhappy and angry. I can't exactly blame that on being on the spectrum, but timing and the two very awkward handicaps of Prosopagnosia and Asperger Sndrome ruined my life.
     
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  16. IanOSU

    IanOSU Member

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    yeah growing up in Taiwan I never knew this was going on till me and my sister moved to the US. my sister had a severe flu and went to the hospital, and they had her spend a night there and discharged her the next day. she got billed for $2000.
    My girlfriend in Taiwan also had a flu and spent 3 nights in the hospital, her bill was $300...
     
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  17. IanOSU

    IanOSU Member

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    I tried to "fit in" very hard as well, I still do. and I think I'm quite good, people don't really suspect anything except that I'm a little odd. now, to get to that point of social life was so exhausting. I was micro-managing everything I say and do. and the more I try the more anxious and lonely I got even when I was surrounded by friends. to me yes you can learn social skills and fit, but that comes with anxiety and loneliness that also need to be address through therapy. also, my therapy also suggest me to "act out" once in a while to help me release the anxiety.

    regarding getting diagnosed when you were young, from all the interviews and articles that I came across, during and before the 60s children who were diagnosed with ASD were generally institutionalized. professor Temple Grandin and actress Daryl Hannah were both suggested by their doctors to be institutionalized, and luckily both of their mothers refused.
     
  18. Jacoby

    Jacoby Well-Known Member

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    Well I probably would of never received the accommodations I had without a DX and I probably drop out of high school and not graduate. Other than that, about the same.
     
  19. DC1346

    DC1346 Well-Known Member

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    I am 54 and was only diagnosed last April. My diagnosis gave me a long series of ah-hah moments as I reflected upon my life up to that point.

    If anything, knowing why I am the way I am has given me the information I need to work around some of my problems.

    Information is power.

    I have also used my diagnosis as permission to become a reclusive introvert. I have always had reclusive tendencies but because society and family expected me to conform to social norms by having friends and developing relationships, I have always been a bit stressed out because I've been struggling to be someone I'm not.

    Now that I know what I know, I have given up the struggle. I don't socialize outside of work and I refuse to feel guilty about this. My family has backed off from badgering me to settle down and get married because I've told them about the diagnosis and have been effectively using it as a "get out of jail" card for not having a relationship and not getting married.

    A rather unkind person at another site suggested that I have empowered myself to do nothing because of this diagnosis. He went on to say that I was disabled (which I suppose is technically true) but further suggested that all disabled people should seek treatment. I did not agree with this statement because to my way of thinking, treatment is really only necessary if the condition is a problem.

    I don't think I have a problem because I have been living on my own for 35 years. I have a well paying steady job with benefits. I also own a home and a car.

    Where is the problem?

    Why should I have to socialize outside of work if I don't want to? I realize that being reclusive is not a social norm but then again, I am not normal. None of us in the ASD spectrum are.

    The bottom line for me is that the diagnosis really helped me learn a lot about myself and I am grateful for the knowledge.
     
    Last edited: Sep 16, 2015
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  20. IanOSU

    IanOSU Member

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    sounds like it worked out pretty well for you! I have pushed myself pretty hard to socialize because I get lonely when I don't. I got pretty good at it but it always stress me out so much no matter how much success I have. I tend to follow a cycle where I push myself to socialize untill I can't handle the stress anymore, then I shut down and isolate myself completely till I get lonely again then start trying, then stress come and I shut down again.
    treatment is not necessary if not needed, I agree. that should be a personal choice since no aspies are exactly alike.