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Nymeria8
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27 Jun 2012, 4:33 pm

well that was a good question because here we all ended up and no surprise, we all feel the same way. I was just diagnosed at 36 and have been on a quest of this sort myself. Often ranting around about how because nobody can see my AS and because its not interupting my classroom that it no longer important. But might I just continue your rant and say that it is a disgrace that so many of us went undiagnosed and misdiagnosed for most of our lives. Super great for the kids that they have all the help in the world during their formative years and all that jazz but what about us damaged older folks? It was no party fumbling through life alone, silent and isolated in the first place.


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Jtuk
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27 Jun 2012, 4:45 pm

What support do you feel adults need? I might be suffering from a lack of imagination, but what could help, beyond what is currently provided?

Jason



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27 Jun 2012, 5:11 pm

Good question. Nothing would help. And we're better off without "the help" because the first thing they do in order to start "helping" is give you a label (official) that is very risky because it can destroy what little life you've built for yourself.

The municipality did me the big favor of paying for my membership at the only institute that "helps" AS people. I had to do about 2 years of interviews and bureaucratic processes (including getting an official diagnosis) in order to be accepted into the institute. The first day I participated, they tell me that I have to give them the contact details of my boss so that they can tell my boss that I am autistic and that I require special arrangements. This in an economy where it's practically impossible to find a job, plus I'm 50 years old, plus I have no one in the world, no family or friends or parents or any money, and I'm always fired no matter what even without the bosses knowing I'm autistic. And in a country where there are no labor laws to protect autistics from being fired for informing that they are autistic. And my job is in sales, with all the sharks, so what special arrangements are they talking about.

So thanks for the help for adults, but no thanks. It's the most ridiculous thing, not to mention dangerous, apart from ineffective, because the only thing that can help at 50 is to be told what others are saying between the lines - there's nothing I can "learn" at this stage to "improve" any skills. I won't grow a ToM suddenly. The only thing that can help me is to have a "translator" I meet at least once a week who can translate for me, as closely to real-time as possible, what I need to know in order to survive at a job, with a landlord, with a physician, in a law court involving a car that crashed into mine, etc.

Apart from a "translator", we need nothing for the AS itself. We do need social security because we're so often unemployed, but we do get that.

Important note: I'm talking about the reality of a "moderate-autistic" person (according to the new DSM), not a LFA.


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edgewaters
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27 Jun 2012, 5:18 pm

Jtuk wrote:
What support do you feel adults need? I might be suffering from a lack of imagination, but what could help, beyond what is currently provided?

Jason


Mainly help with employment I think. It would be good to have laws that protect autistics from workplace discrimination and perhaps have services that help match autistics with autistic-friendly employers, as well as job counselling designed for autistics. Job training/retraining programs wouldn't hurt either.

Most workplaces here now also have third-party, confidential counselling services for employees, but I imagine there is not much help there available for people on the spectrum. It would be good to have that, too.



Last edited by edgewaters on 27 Jun 2012, 5:21 pm, edited 1 time in total.

EstherJ
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27 Jun 2012, 5:19 pm

Well, for me personally, I just need strategies to learn how to manage myself better.
Such as, I REALLY need routine, so what's the best way to create a routine that works, where I won't impulsively mess it up?
Or, I REALLY get overstimulated in classrooms. What's the best kind of coping mechanisms that could help me manage it?
Stuff like that.



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27 Jun 2012, 5:19 pm

MindWithoutWalls wrote:
I was told there's an organization locally that only provides services to those diagnosed before age 21, regardless of how old they are now. So, they'll help adults, but only those lucky enough to find out they needed that kind of help early enough in life. This is even though they'll assess an adult of any age, apparently. I think that's ludicrous. Maybe it's a funding issue or something. But it still stinks.


Everything I've seen so far works this way. I've overcome some obstacles but I'm still very screwed up, I know this about myself. I just wonder why I'm excluded from some of these programs that would benefit me as much if not more than a 22 year old who was diagnosed as a child.



Last edited by Rascal77s on 27 Jun 2012, 5:21 pm, edited 1 time in total.

Rascal77s
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27 Jun 2012, 5:20 pm

Oooops



lostgirl1986
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27 Jun 2012, 5:35 pm

I've noticed that as well. I've seen tons of books about Asperger's Syndrome at the book store about children under the teacher resource/parenting section and the few I've seen for adults are usually about a male perspective. Sure, I know that there are books for women as well but it's rare. It's like adults don't have it, especially women.



SpiritBlooms
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27 Jun 2012, 6:17 pm

EstherJ wrote:
Why is the world so focused on autistic children only, and missing the rest of the population? Is it some kind of collective social tunnel vision???
Because, dontcha know, as soon as you learn some social skills you'll magically not be autistic anymore. :roll:

I agree, there's not much, especially for older adult females who were never diagnosed. According to the one therapist I ever tried to discuss it with we don't exist, and my dad couldn't have had AS because he wasn't an accountant.



Jitro
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27 Jun 2012, 6:21 pm

Nearly all disorders are focused mainly on children. One speaks of children with ADHD, but not adults with it. It's not just with autism.



MindWithoutWalls
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27 Jun 2012, 6:45 pm

If I get diagnosed, I'm inclined to want someone to talk to about how I feel about all this stuff, at least at first. For me, there's a lot to deal with, so it's more complex than just having the relief of knowing what's going on. Ideally, the counselor or whatever should be someone who knows something about Asperger's and adults, especially late-diagnosed adults. I might also want it to be someone I can talk to about things like relationship issues, so that I have more than just books to help me out when things are tough.

If I continue to struggle with some of the life skills I'm trying to improve with the books I read, a live person to talk things over with might help me understand what I'm missing and expand my interpretation of what the books are suggesting.

There can be so much information about the spectrum to wade through that it would be nice to have a concise list of materials to start with, and that's what I've tried to do with the Cabinet page of my Website. But knowing that someone I talk to would be able to recommend things based on my personal needs would also be quite helpful.

I think we're talking resource center more than service provision for someone like me. I would hope it would be a base I could go out from if I decide I want to be more public in my advocacy for us, too. And it should be a place where I can talk with other Aspies face to face when I feel the need to.

Advocacy when applying or reapplying for benefits would be a nice touch, given how difficult filling out forms and advocating for oneself can be.

That's my beginning list.


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Last edited by MindWithoutWalls on 27 Jun 2012, 8:15 pm, edited 1 time in total.

CuriousKitten
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27 Jun 2012, 7:13 pm

For me, increased awareness and understanding would be a great help. not expecting us to "read between the lines" == getting a deaf person's attention before talking.

It would also help if Autism Speaks would stop depicting those on the spectrum as uselessly broken -- more of an emphasis on the reality of the spectrum and the fact that we can be useful and productive would be a tremendous step on the right direction!

Online resources to facilitate learning social skills and anything else that may be missing would also be a godsend.


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anomy
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27 Jun 2012, 7:18 pm

Could money be a factor?

This may sound somewhat cynical but I think one factor in why so much focus is placed on asperger kids versus adults may be in part because there is more money in it. Books, programs, whatever may sell better if tney are focused more on kids. Also, grants for kids may be much easier to come by for non-profits. Even corporate donations may be easier to come by.



Monkeybuttorama
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27 Jun 2012, 7:25 pm

One thing I'd like to see more readily available, which I feel is VERY important to adults with AS is parenting classes geared toward AS parents. There are so many questions I have, and only anecdotal information. What drawbacks are there to having almost no ToM? How can I overcome this hindrance? What about stimming around kids? What's appropriate for your child to see you indulge in? What if you are AS and have NT kids? What then? Clearly most AS people don't have a great grasp on NT thought patterns and behaviors. How about explaining to your child why you aren't like other parents?

What about support for CHILDREN of AS parents, to make sure THEY develop properly, even if they have no symptoms of anything?

If kids are so very important, you'd think they would realize how important it is to be a proper parent if you have a disability..

They are missing a HUGELY important factor in *childcare*, which is what they are focused on..


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CuriousKitten
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27 Jun 2012, 7:29 pm

Monkeybuttorama wrote:
One thing I'd like to see more readily available, which I feel is VERY important to adults with AS is parenting classes geared toward AS parents. There are so many questions I have, and only anecdotal information. What drawbacks are there to having almost no ToM? How can I overcome this hindrance? What about stimming around kids? What's appropriate for your child to see you indulge in? What if you are AS and have NT kids? What then? Clearly most AS people don't have a great grasp on NT thought patterns and behaviors. How about explaining to your child why you aren't like other parents?

What about support for CHILDREN of AS parents, to make sure THEY develop properly, even if they have no symptoms of anything?

If kids are so very important, you'd think they would realize how important it is to be a proper parent if you have a disability..

They are missing a HUGELY important factor in *childcare*, which is what they are focused on..


I doubt it has occurred to them that AS adults could be social enough to procreate.


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BAP: 109 aloof, 94 rigid and 85 pragmatic


boxxarom
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27 Jun 2012, 7:33 pm

.......beacuse they're so darn cute! :D
I think it has to do with the paranoid, stressed out parents though. It would make sense to me for them to throw all of their time, money and energy into something they've just encountered. As people with autism age, I think the people around them just get used to it and start to care less.


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