What is the final fate of people with Asperger syndrome

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Pengu1n
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27 Nov 2011, 4:35 am

I was wondering, how does it all end for people with Asperger's syndrome? What is life like to close out your life?

I think my question is aimed more at people with Aspergers who were not diagnosed until at least early adulthood. I was not diagnosed until age 24, and I struggled terribly in a massive uphill battle for many years. I think being undiagnosed for so long made me appreciate both sides of the coin and view both extremes of life.

For people who were diagnosed as they were young, I'm not sure they can truly appreciate what it is like to live "undiagnosed" ........ to live uncompartmentalized or have expectations thrust on you of being a "normal person" and being functional.

I was wondering though how it tends to go when you are older, and most of your "Family support" has passed on. I can not ever see myself having children or a marriage, so I do not know who will be there for me............ and I have poor self-help skills.

I have good "survival skills" ,but I have extremely poor "social survival skills." For instance, I am terrible at things like calling on the phone for technical help with various things, paying bills, and other types of chores and tasks that most people take for granted. I try and practice these things, but I always make mistakes, and filling out forms and things like taxes and bills and paperwork make my head spin. I worry about things like getting made homeless at age 75 because I failed to pay some tax, and the government comes to take my house and throws me on the street.

I was just wondering if any older people with AS had some narratives on what their life is like when they lose help from their families and live alone and as an older person.



Last edited by Pengu1n on 27 Nov 2011, 4:41 am, edited 1 time in total.

DuneyBlues
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27 Nov 2011, 4:40 am

In regards to your final fate question , Were already evolved and the epidemic of autism is exponentially increasing but I doubt will outnumber them.

The cold adapted species - Autistics

Rather than describing all the species or sub-species paleoanthropology likes us to believe existed in Eurasia, it's more convenient to describe them as one single species evolving from Homo erectus to Neanderthals. The earliest finds of Homo in Europe is Ceprano, Italy that is dated to between 800,000 and 900,000 years. 8 The cold adapted species changed from a promiscuous primate species into a endogamous, group-bonded species. Their social structure allowed little or no contact between groups. This was an adaptation to small, sparse populations. The groups consisted of 1-3 females in reproductive age, 1-3 males in reproductive age, children and elderly people. The females probably were related while the males dispersed to other groups at maturity. They matured late and lived long. Their diet was primarily based on meat, and they became adapted to this diet. Neanderthals became cold adapted in various ways. They probability spent the winter in low-activity mode, and built-up supplies during good times.

The warm adapted species - NTs

The warm adapted species changed from a promiscuous primate species to a monogamous, pair bonded species. This provided the most efficient solution in their environment. This species evolved from Homo erectus to anatomical modern humans (Hss). In the process of increasing their brain size, or maybe as a means of reducing parasite loads, they became naked. They lived a nomadic life-style in larger tribes. Their way of living provided advanced social adaptations. Men were hunters, and women gathered and cared for babies. With those roles, came male alliances and warfare. It was more of a rule to find one's partner within the tribe than in another tribe. This lead to evolution of the modern status concept and hierarchies. It also lead to aggression between males, and provided the basis for ethnocentric ideas and racism. The offspring developed fast, and they could reproduce fast. Hss is a patriarchal species and behaves like chimps in many respects.

Though this may not answer your other questions , it shows you how neanderthals survived and how they were slowly wiped out through reproduction.



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27 Nov 2011, 4:58 am

I wasn't DXed until I turned 20 for the most popular reason. People who struggle with it, without a DX in adulthood often become very suicidal. I'm still slightly suicidal because I have all the same worries as you do about being able to even look after myself and live a fulfilling life. With the right supports I could be capable of living a healthy happy life. The problem is getting access to it. Which is where our governments and society itself aren't helpful. I'm doing my best to get the right help and support and they're doing their best but I still wouldn't be surprised if the conclusion to my aspergers syndrome is death. I'm sorry to be pessimistic I do not want advertize suicide as a good conclusion to anyone's life. It's not at all. You need to fight for help and resources and use the thought of a better world as something to keep you going. Hopefully I'll be able to help other people and myself enough that suicide isn't going to be the end to my story. I just have a really hard time fighting for my right to a life filled with happiness and not despair.



nat4200
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27 Nov 2011, 5:18 am

Redacted



Last edited by nat4200 on 19 Apr 2012, 4:31 am, edited 1 time in total.

PTSmorrow
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27 Nov 2011, 5:36 am

For certain reasons i was never supported by my family. I'm on my own since i was 17.

You live "undiagnosed" each time you meet new people, and this applies for the rest of your life, unless you would put on a big sign to show you're autistic. This also means, there will be situations in which you are misunderstood and insulted, and there is nothing you can do to avoid these incidents.

About the self--help skills, the best you can do for yourself in this respect is to find a personal counselor to give you the kind of support you need. There are even budget counseling services online. If you need different kinds of support, a social worker could be helpful. They even accompany you to appointments.

One of my biggest problems was and still is time management, and i had several classes and counselings on it. It taught me how to use appointment calendars, reminders, and a number of alarm clocks.

I can relate to the problems using the phone, mine is unplugged most of the time. If i have to make an appointment, i go there and make it in person. Alternatively, i use email.



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27 Nov 2011, 5:48 am

There'll be some help with the things you need to do when you're the last one standing, from the government (Western countries for certain). The best thing to do is have this help put in place before those who help you with living die or require help themselves.

Getting this help for yourself when only you remain will probably be too difficult for you if you have an ASD (I'm speaking of the common disabled presentation of AS here).

It'll never be easy, and it'll be harder for you than most will know. Nothing better was promised in life though.



DreamSofa
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27 Nov 2011, 5:59 am

Quote:
how does it all end for people with Asperger's syndrome


Death - just like for NTs.



DreamSofa
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27 Nov 2011, 6:00 am

Quote:
People who struggle with it, without a DX in adulthood often become very suicidal


Cites, please. Or stop with the uninformed generalisations.



Angel_ryan
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27 Nov 2011, 6:17 am

DreamSofa wrote:
Quote:
People who struggle with it, without a DX in adulthood often become very suicidal


Cites, please. Or stop with the uninformed generalisations.


Many people I've met in therapy settings. A surprising amount of people I know have had a period where they've contemplated or even attempted suicide because of the struggle to function in society with the challenges of their ASDs. Here's some articles in case my life experiences aren't enough
http://www.psychologytoday.com/blog/asp ... nd-suicide
http://www.autism-help.org/family-suici ... autism.htm
If you research you'll find more.



TB
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27 Nov 2011, 6:30 am

Angel_ryan wrote:
DreamSofa wrote:
Quote:
People who struggle with it, without a DX in adulthood often become very suicidal


Cites, please. Or stop with the uninformed generalisations.


Many people I've met in therapy settings. A surprising amount of people I know have had a period where they've contemplated or even attempted suicide because of the struggle to function in society with the challenges of their ASDs. Here's some articles in case my life experiences aren't enough
http://www.psychologytoday.com/blog/asp ... nd-suicide
http://www.autism-help.org/family-suici ... autism.htm
If you research you'll find more.


I agree with this, there are many sources saying that depression and thus being suicidal is drastically higher in autistics. It sounds logical and its personal experience aswell.



Antreus
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27 Nov 2011, 6:49 am

I've heard this sentiment a lot around here and you just echoed it, 'sometimes I'm glad that I was diagnosed later in my adult life'. It's a toss-up for me.

If I was diagnosed earlier I would have had better access to services, a better understanding of myself, more fruitful social encounters as a result, and better self-confidence in my abilities sooner rather than later on. Right now I am currently trying to get SSI just so that I can support myself. I think people don't really change, just apply themselves different. Because of that I don't think I'd be any less of the person I am today whether or not I was diagnosed earlier. I have never been one to put a limit on what I can and cannot experience or do. I have always had a desire to prove and improve myself, which is one thing you need to survive in the world. Being diagnosed sooner would have saved me probably 5 years of being dazed and confused in my early to mid twenties.

I think things tend to get worse, on average, for those on the spectrum whom haven't started on their career path by their mid-twenties. It tends to slow down typical life-milestones maybe about 5-7 years (using myself as a self-report) but with adequate support and services anyone on the spectrum can and will thrive so long as they have the willpower to see it through and to get back up again once they've hit a rough patch (me currently).

I think it's hit or miss on which side of life you excel in initially, usually you are good at one and bad at another from what I've seen. For me I have had great success academically and bad luck in the love department. I know someone whom the opposite is the case. But you've got to throw yourself to the wind at some point, that's how we learn to cope. Being lost and confused, without a diagnosis as a road map whilst doing this, has it's consequences. With a diagnosis you can make better decisions and should you run into troubles there's hopefully support and services to get you up and running faster with less decompensation between 'episodes'.

I don't want to say people are statistics, they're individuals, of course. Many high-functioning persons on the spectrum though are none-the-less unemployed and/or underemployed - myself included.

Here's some advice: Get on SSI as soon as you can so you have a safety net while you pursue/develope a profession or some sort of self-employ for yourself. This can take time so be patient with yourself. The term late-bloomer is something I would apply to someone on the spectrum, so don't lose sight of that.

What happened to me was this: I was unable to successfully turn a special interest into a profession and/or career path, still working on that, and it's been a bit bumpy. I'm 25 now, living with my folks, after 7 years of not living with them - difficult.

I have had and met some amazing people, even though I rarely get to see them now, whom have helped me grow as a person in so many ways, but currently I feel like I've regressed and/or my AS symptoms have worsened since losing contact with those people whom I poured a lot of energy into in order to have friendships initially with them. It's almost like not having a part of yourself, dwarfed in some way. The feeling I think I feel is one that long married couples have when their partner isn't near. They just don't function as well alone because half their brain is in the other person, which is relied upon, and when it is no longer there.. well you get the idea by now.

Problems with academia, career, and professions:
Finding something you are specially interested in alone is something I am currently having difficulty with. I've switched majors three times over the course of 7 years in three completely unrelated fields. Fine art, liberal arts, and now computer and hard science.

I know for certain that not being diagnosed lost me my matriculation status at my last University. I know that my periods of decompensation have cost me dearly in terms of deadlines and late-assignments, because I didn't have access to services or support. This has taken a toll on me just by itself financially, emotionally, chronologically too. I'm behind my peer-group, which makes it even harder to socialize for myself. I know a lot of friends whom have graduated already, getting married, and so on. I feel even more out-of-sync than I did when I was 20-23. It's normal to lose touch with people, that's not really debatable as life isn't certain, but I am speaking on an existential level of being when I say out-of-sync.


Hope this helps you and someone else reading this to have a better picture, long-term, of where this diagnosis leads you in society. Just remember that society is a concept and you are an individual - go at your own pace.



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27 Nov 2011, 6:50 am

The exact same phenomenon is very common in any stigmatized minority, though. So--It is likely, extremely likely, that the depression associated with autism is very much like the depression associated with being a transsexual. That is--the person you are, and the person that others want you to be, are two different people; and you are forced to either be rejected, live a lie, or both. (Gay/lesbian/bi people have the same problem to a less severe degree.)

I think we will see over the next twenty years that depression rates both among autistics and among the transsexual population will be going down, since both atypical gender identity and disability are receiving increasing acceptance.


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27 Nov 2011, 6:53 am

@OP Yeah, I worry about that.

My parents do a lot "running the house" type stuff and are a source of information about tax forms and all manner of other things that baffle me (no matter how many times I relearn them). And I take care of various things that they aren't up to, anymore.

Right now, it's a pretty good system, but it's not going to stay that way. Their health is slowly deteriorating, and so their needs will be increasing. And there are ways in which my functioning is also slowly getting worse. I get SSDI, but it's nowhere near the full amount, and with the diagnoses I have (which aren't ASD) I'm not sure if I could qualify for services of some kind if I needed them in 10-15 years. And, I have no siblings and no contact with extended family, so I'm on my own in dealing with all of the above.

With some help with basic things I can manage other tasks like hiring (and firing, and hiring another) lawyer to threaten to sue someone in order to get them to stop trying to rip off my parents. But making all those calls and dealing with all that interaction and stress, on top of taking care of 2 people and managing a big house would be way, way over my head. I've had some "previews" when my mother was in the hospital for an extended time, and found out just how bad my executive functioning really is when I'm overloaded with things to do.

Ugh, too tired right now to get any more thoughts out in a coherent way.

P.S. As far as paperwork -- I actually have recurring bad dreams about some unexpected, outrageously awful thing happening because I forgot to check a box on a form.



Last edited by Apple_in_my_Eye on 27 Nov 2011, 7:04 am, edited 2 times in total.

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27 Nov 2011, 6:59 am

I think it's important to educate yourself on how to get help with things you can't do; otherwise you really can be left high and dry like that. It's no joke.


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27 Nov 2011, 7:09 am

Yep.

When it's all thrown on you, you most likely won't cope at all. One needs to plan for these things with their carers before that happens.