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OregonBecky
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08 Sep 2008, 9:47 pm

My son is an aspy-hfa-whatever in his early 20s. My daughter is classically autistic, barely verbal and also in her early 20s. They both get the same kinds of supports, except that my daughter gets more money for her care because she is very, very needy.

The model for both of them seems like that when our kids reach age 21, they are stagnating blobs of protoplasm who are getting services meant solely to keep them healthy and safe, all hope of them becoming anything more abandoned.

My son is very smart, he's just not done figuring out how to navigate this scary NT world but he'll get there, despite the lack of services which would actually help him, services that should have programs which encourage growing up and growing out of a dependency on government supports.

For instance, he takes community college classes which are not a challenge academically for him but they are a huge challenge on social levels and with communication skills. He goes to the college not for credits but to learn about his humanity, much like Data on Star Trek would, I suppose. He is doing great with this plan but it's not a good plan for the agencies. He is offered supports by county agencies where they'll pay for someone can help him get through watching Batman five times in a row or wandering around the mall, but when I suggest that he'd rather figure out life at the community college, they say, no way and suggest that we're trying to scam the system and make them pay for school which is against their rules. It doesn't even matter if he doesn't take credited classes.

So... I thinking that when our kids reach a certain age, they are considered useless and the agencies assume that they're just marking time until they die.


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natesmom
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09 Sep 2008, 12:20 am

Wow I am so sorry.

Does he actually have to chose a major or can he take what he wants? Maybe it's the specific case manager you both are working with. If you can't get good responses from that person, can you switch case managers?



ouinon
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09 Sep 2008, 5:26 am

OregonBecky wrote:
I thinking that when our kids reach a certain age, they are considered useless, and the agencies assume that they're just marking time until they die.

I think that this might have something to do with the fact that this is what many/most people actually think about life when they are not temporarily/repeatedly assuaging/satisfying a need for meaning with the purchase of a new something or other, obtaining a payrise, sex, or engaging in reproduction of the species, ( the latter two activities being very largely what we are biologically programmed to see as the meaning of life anyway) etc.

If someone doesn't seem likely to contribute to, affirm, or participate in, that system of meaning then their life is "useless". It needs a totally different set of values about life to see someone who does none of the above things as having any function or value.

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ster
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09 Sep 2008, 5:51 am

it's quite unfortunate that many people "slip through the cracks"....i've had my share of students who don't qualify for services after they turn 21- absolutely absurd! .......check into your local autism society- there might be some programs that you're not aware of. Chapel Haven offers an adult AS program that's worth checking into- teaching real world skills & independent living skills ( many students go on to live in an apartment on their own or with a roommate)



ouinon
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09 Sep 2008, 6:25 am

Ken G has just posted an article from Social Work Today

http://www.socialworktoday.com/archive/090208p12.shtml

in Media Rep at:

http://www.wrongplanet.net/postt76777.html

on this very issue; " Autism into Adulthood". :)

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DW_a_mom
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09 Sep 2008, 11:52 am

I'm sorry that I don't have time to read those articles right now, but this is my thought:

Our kids do almost everything on a different time schedule than NT kids. They often tie shoes later, learn to ride a bike later, are ready for overnights away from home later, take on responsibility later. And yet the world of social services lives on this time schedule that assumes everyone is mature by a certain age. Well, our kids aren't/won't be. They'll finish the process of "growing up" mentally later. To call them "adults" at the same age as NT's doesn't make much sense, because they can and will grow into themselves given half a chance. They're still kids, in many ways, past the ages NT's start to assert independence - extremely well informed ones on matters of science, history, etc - but still in need of guidance.

After all, "growing up" IS about learning to navigate the world, and NOT about the things one learns in the way of facts. That takes longer for AS.

So getting society to adapt social services for this? Tricky. I'm not sure society has the funds for it, so they will rebel every step of the way. Somehow it needs to be seen as investment, one that will return more long run than leaving things as they are.


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Mom to an amazing AS son, who recently graduated from the university (plus an also amazing non-AS daughter). Most likely part of the "Broader Autism Phenotype" (some traits).


OregonBecky
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09 Sep 2008, 1:13 pm

DW_a_mom wrote:
I'm sorry that I don't have time to read those articles right now, but this is my thought:


So getting society to adapt social services for this? Tricky. I'm not sure society has the funds for it, so they will rebel every step of the way. Somehow it needs to be seen as investment, one that will return more long run than leaving things as they are.


Thanks for all the thoughts. I want to use them to make the agencies feel stupid and clueless about who are children are.

As for spending more funds, it's not that we're wanting more money. They're misdirecting the money. My son making wonderful progress according to his personal temperament. If we can keep him feeling safe and supported as he emerges from his aspy coccoon into an aspy butterfly, he'll not be in need of government funds. He'll be able to take care of himself. The system isn't set up for helping people get out of their system and helpimg them leave when they're ready and able. The system is set up to say, if you don't make it to a certain point by age 21, potential is irrelevant.


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