What support services are we in need of the most

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Aspieallien
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03 Nov 2010, 7:17 am

Hi there all

Would like to know what you think our greatest needs for support services are. What areas are the most lacking, what would improve our position the most.

Like:

Employment and training services (Aspie specific)
Anti discrimination that actualy gets results
Early diagnosis/intervention
Schoolyard anti bullying programs (Zero tolerance)
Helping Aspies live independantly
Greater public education about AS
Counseling services

What are our greatest needs. What will help to change our lives for the better for us and most of all our kids.
We are entitled to our lives, and to be able to live them fully, so are our kids. So think big what do we need to lobby for the most.


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Maolcolm
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03 Nov 2010, 7:40 am

My primary concerns are:

Help with living independently and maintaining it.

Help with Aspie specific employment.

More people need to be properly trained to accurately diagnose AS in adults.



cthulukitty
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03 Nov 2010, 8:22 am

It seems like it would be very hard to rank which things are more important than others, since every individual or community is going to require a different mix of appropriate services. Adding to your list though, I'd say that we need education (whether special ed or not) that actually works. It seems to me that the primary concern for many schools is simply containing autistic students and preventing them from disrupting the school environment, rather than actually making sure they get an education that lives up to their potential. Another important thing would be community support groups and/or social functions run by and for people on the spectrum. For both of those items, I'd suggest that it would be wonderful to see more autistic adults involved in services for younger autistic people. All children need older peers like themselves to look up to, but most of the people involved in special ed, medicine, and support services are neurotypical. Autistic people should have autistic role models who are part of their everyday life.


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CockneyRebel
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03 Nov 2010, 8:55 am

I like the part about the role models. I've found mine. 8)


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Vector
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03 Nov 2010, 9:02 am

I think there are two areas where we need the most support:

1) Transition assistance. People with autism often do quite well once they are in a hospitable situation. What we need more than anything else is help getting into these situations. As a teacher, I have seen tremendous damage done by just throwing kids with autism into a new school or a new classroom with no understanding of how overwhelming the situation is for them. I have rarely seen a concerted effort to introduce them slowly into a new environment. They are often taken around before the school year begins and given a chance to meet their teachers and see their classrooms, but this is the sort of token effort that acknowledges their difficulties but avoids the hard work of making sure their needs are actually met.

This need is even more severe for adults, who need support with finding work, making friends, and setting up a home. All of these things are major transitions that we are expected to handle without clear guidance or help.

2. Understanding and knowledge. The concept on an autism spectrum, the idea that there are people with varying degrees and types or autism is still foreign to most people. The idea that people with Aspergers are something more than obnoxious geeks is still new. We need first of all for people to acknowledge that we exist. And then to begin to understand that we honestly can't process social cues or complex situations the way that they do.

I get very, very angry at parents of people with autism who attack neurodiverse people for speaking for ourselves, but doing so imperfectly. Check out this parent blog about the Communication Shutdown event that attacks people on the spectrum for being "not very nice" and the commenter who is angry with us for being "hypersensitive." If you don't understand that "hypersensitive" is a pretty good synonym for "autistic" you don't know enough about the topic to have an informed opinion.

I think that many, many situations where people with AS need support would just not happen if there was a better general understanding of who we are.


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ninszot
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03 Nov 2010, 9:05 am

the health system here has been working towards a provincial health database that would be accessable to health service providers - this is really important because not all health service providers are trained to recognise autism.

I almost died over the weekend because one ignorant traige nurse decided I was lying about being autistic - and refused to admit me to hospital when I asked my partner come to help me talk to the doctor. She would not accomodate my communication needs because I did not fit her preconcieved notion of autism - 2 1/2 hrs later I was going into circulatory shock (I was within 1-2 hrs of dying!) my partner took me to a different hospital where they accepted my disclosure and included his input . . . but by this time I was barely concious and could only mumble and nod)

1) accessable health database
2) general public education
3) eductaion supports - not just at the public school level but additional supports to ensure we have the stability we need to pursue university (perhaps not as able to work and study but would be more able to work if were able to get that higher education - think of all the taxes they'd save not paying out for our disability and all the tax dollars we'd pay when we graduate!)



richardbenson
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03 Nov 2010, 10:27 am

Affordable housing. and Food, :pig:


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applesauce
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03 Nov 2010, 1:33 pm

ninszot wrote:
3) eductaion supports - not just at the public school level but additional supports to ensure we have the stability we need to pursue university (perhaps not as able to work and study but would be more able to work if were able to get that higher education - think of all the taxes they'd save not paying out for our disability and all the tax dollars we'd pay when we graduate!)


I was going to post on this thread but you've said it already.

There's an attitude that any job is ok for someone with Autism and we should just take it or live on benefit and be happy.

If you want more than that, it's a hard slog. You earn less money, find it harder to get a job to save for higher education yet in some ways its the place you ought to be. A lot of autistic people (aspie people especially) are in higher education or beyond. My sister's friend's partner is an astro physicist >.> and she's an aspie.

I've spent the last year and a half saving to do a masters and Im one of the lucky people who has a job (albeit now under threat from cuts and low paid anyhow) to save from. There is no support for people with autism in the UK to do higher education. There is a disabled student allowance but it does not apply to the most basic and important thing - cost of living. You can't use it for maintenance, and in a lot of cases that's the support we most need.

Working and studying at the same time is not always possible to do for people like us. Right now this is dear to my heart, so I agree with you 100%.



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03 Nov 2010, 2:38 pm

Quote:
Another important thing would be community support groups and/or social functions run by and for people on the spectrum.


I like this one a lot and went to one recently but ended not really talking. But I still liked it, or the idea of it.

I'm not sure, but you might have to worry about professionals wanting to take over.



Chama
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03 Nov 2010, 4:25 pm

Help with planning and execution, for me. :<

I have trouble organising and understanding all the steps that one task takes to complete. Even when I make lists, I'll end up obsessing over writing out how to do something and never end up doing it, or become overwhelmed by the thought of doing it even though I've planned it all out. I do much better when someone can help me do something that I've decided to do, or at least help me get started. I need to be pointed in a direction and once you've got me going, I can keep going.



wavefreak58
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03 Nov 2010, 4:35 pm

How about a culture that doesn't value monetary success so highly that members of society whose gifts tend toward things hard to value are not marginalized and considered a burden to 'productive' members of society.



Chama
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03 Nov 2010, 4:39 pm

wavefreak58 wrote:
How about a culture that doesn't value monetary success so highly that members of society whose gifts tend toward things hard to value are not marginalized and considered a burden to 'productive' members of society.


YES! I go on about this to people all the time! Just because something isn't worth money doesn't make it worthless. And just because someone makes money doesn't mean they're productive. I can think of a lot of people who make a lot of money, but if I think about what they did to make that money it doesn't seem like they did much for anyone, or that they accomplished anything effective or lasting... in the end, money is a bunch of nothing and it's what you did with your time that's worth something. People are brainwashed by money. :(



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03 Nov 2010, 4:49 pm

For several years now, I have often wished I had someone to do a little PR (public relations) kind of work for me such as coming along on visits to doctors. I can deal with most other situations well enough, but I never feel confident about my answers to doctor's questions and I do not know how to get everything said within the little time they usually seem to have for listening. This latest doctor I have just begun seeing seems more patient about listening, yet he also seems to be dismissing at least one of the most-troublesome symptoms I have been recently experiencing when my blood pressure sometimes begins going through the roof after eating.


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Jediscraps
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03 Nov 2010, 5:04 pm

I'm not sure how to explain what I meant professionals above. For example, if it's a group for being social and/or having fun, I'd worry it would be turned into "therapy" or trying to make people into some they're not. That's sort of the thought and worry I had. I'm also someone who likes autonomy.

I'm not against the idea of educated people/professionals helping to organize.

I'd also worry people like me, who are not "officially diagnosed", yet, at least (yet somehow written in med. records) not being welcomed in these sorts of things as well.



kat_ross
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04 Nov 2010, 2:04 am

Wow! I think that all of the things on your list are very important, and would most certainly be helpful. Right now I am looking to find a job and move out on my own, so I guess for me personally, anti-discrimination in the workplace and assistance with independent living are my biggest concerns.

I guess one thing that I would add to the list would be better training for professionals when it comes to diagnosing and counseling adults on the spectrum and particularly FEMALE adults on the spectrum.

Increased public education/awareness is also so important because not only could it increase understanding/promote tolerance in school or in the workplace, but also because it could in a way make up for shortcomings among medical professionals by enabling spectrum individuals to make a preliminary self-diagnosis. I never heard of asperger's until I was about 20, but as soon as I learned the basics facts about it, I immediately began to suspect that I was an aspie. I had heard of autism before, but never had a clear idea of what the symptoms were. I imagine that if kids learned about these things in health class at school, or if parents saw stories on the news/in the local paper, etc...so many of us wouldn't have to wait until our 20's or 30's to figure things out.