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asplanet
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10 Jan 2008, 7:17 am

I feel the whole process of support and help is quite disjointed, one of the main problems is often down to the lack of communication, cooperation, fighting over funding between the various professions who are supposed to be the diagnostic experts and support providers.

I also feel there is a urgent need for more adolescences support. Lots of parents / child and adult groups. But the age when people on the spectrum can be most effected, they seem to be left out of the groups - in between some where.

The only real support I feel I have had is from the Aspie community - so thank you :smurfin:


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woodsman25
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10 Jan 2008, 7:32 am

I think more should be done to educate the public at the elementary school level about ASD's and shash steriotypes about the disorder. This could help with bullying and acceptance, 2 very improtant issues that can have serious effects on an ASD individual who already will have a tough time in school so why have it harder.

With incidences of 1:150 more and more ASD people are being 'discovered' and its such an issue that will effect society, yet so many dont know anything about it. The outcasting and bullying continues, these ASD children have hard lives that get harder and harder its no wonder self esteme is screwed, some quit school, some even kill themselfs, its so sad and preventible.


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10 Jan 2008, 10:59 am

I agree. We need much more support at the early levels. We need a lot of help toward understanding and outreach as well. Most people think that all autism is the classic, non-verbal, inability to control themselves sort. It's just not. It's called a spectrum because our behaviours are just that. All over the spectrum.

I think that more groups aimed at supporting (especially AS and HFA kids) would be great. That is the time when we start to look around and say...hmmm...something is different here. There are lots of groups to support people on the classic and LFA scales (or their families rather), but not alot out there for us folks who are the square pegs, so to speak.

I wish we had a place on here dedicated to locations and supporting each other in person.


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10 Jan 2008, 11:48 am

There needs to be more acceptance for people on the autistic spectrum. I know that I can't make this change, but I wish that people would stop the bullying, discrimination and torment and just be more open minded.
Schools need to be made more aware of ASDs ranging from LFA to AS. They need to have smaller classes, more teachers and be helpful and encourage those who may learn differently instead of punishing them for being "non-conformists" [as the teachers would say].

People in third world countries need more doctors aware of autism. Also, the public in those countries need to be a LOT more educated about ASDs and stop thinking of people with them as being "possessed by a demonic force". :roll:


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Liverbird
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10 Jan 2008, 11:56 am

I think Autism Awareness groups are on the right track. We (all the supporters of autism) need to stop squabbling amongst ourselves about "the cure". We need to agree to disagree. Parents of children with LFA are always going to want a cure for their child who appears to be suffering from their point of view. Those of us on the HFA and AS part of the scale will always feel that we are wonderful the way that we are and embrace the parts of the ASD that make us creative, etc.

It's one boat. I think the current genetic testing studies could finally be the answer that we all seek. However, with that knowledge comes the responsibility of not turning our world into another Gattaca. Not everyone wants to eliminate ASDs entirely. I think that those of us who are HFA or AS and have children in that part of the spectrum would agree that our houses are much more interesting places to be with us in them.

I vote for finding the cause so that when children are born with it can get early intervention as quickly as possible. However, I pray that this will not be used for the purpose of finding a way to obliterate ASDs. We need to remember the lessons learned from "I Am Legend". The cancer cure looked good at the beginning and then see what happened.


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TLPG
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10 Jan 2008, 4:06 pm

Very big subject for me, this one.

In Victoria, Australia, they are developing an Autism State Plan. I am involved in the process - I put a submission in commenting on the discussion paper, and I attended one of the seminars where heavy emphasis was placed on support systems. I was the only adult ASD person at this seminar (there were several) as most were parents or professionals. The ending point was support systems for kids (which is important) but I made sure my voice was heard as well for us adults.

I also took the opportunity to warn them off certain parts of the Internet re mercury poisoning and the associated nonsense, and I was heard in spades about that one!

My next step - while waiting for the next espect of the State Plan - is to get the federal government involved so that the other Australian states follow Victoria's lead as well as improving their responsibilities. The first Parliament of the new government elected on November 24 sits on February 12, and by the end of that two week sitting a committee on Family and Community Services should be formed. That's when I act.



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10 Jan 2008, 8:21 pm

There still needs to be more awareness and education among the NT population. After all we have to adjust to their world, can't they at lest try to understand where we are coming from, it only seems fair. I still run into people who think that if we just "tried harder" we'd be "normal," and then, when I try to explain that its a nuerological disorder and not that simple they get all snotty like its my fault I don't naturally comprehend all their petty social intracacies, as if I made my brain different.



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10 Jan 2008, 8:34 pm

I agree that something needs to be done about bullying. I went through it when I was in junior high and it was awful.

In other ways, however, I think I have it better than some kids growing up today. I was incorrectly labeled as hyperactive as a child. However, my teachers, for the most part, treated me as a person, not a label. People shouldn't be defined by their labels.



lupin
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10 Jan 2008, 8:43 pm

militarybrat wrote:
There still needs to be more awareness and education among the NT population. After all we have to adjust to their world, can't they at lest try to understand where we are coming from, it only seems fair. I still run into people who think that if we just "tried harder" we'd be "normal," and then, when I try to explain that its a nuerological disorder and not that simple they get all snotty like its my fault I don't naturally comprehend all their petty social intracacies, as if I made my brain different.


Certainly agree with you MB.

If I could change one thing about the world it would be to make all NTs much kinder. A lot of them aren't. They just pretend to be. That;s why they concoct all these 'equality' and 'diversity' charters - to keep reminding themselves to be nice.

It seems to me that most on the spectrum are naturally fair and nice and don't need to have these things drummed into us, We were born knowing.



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10 Jan 2008, 10:28 pm

I would like to be able to tell a new employer that I have AS without fear of discrimination. I would like to be able to expect them to respond by saying, "OK, we won't expect you to make a lot of small talk and we'll give you the work that requires the most attention to detail!" If I forgot to smile and say hi to someone, they would not be offended because they would know I was an aspie. They would set higher standards for me in the areas of honesty, memorization of numbers and random facts, and meticulousness. Yet I would not be expected to keep up with the NTs in the areas of small talk, "social niceties", and nonverbal communication.

I would like for AS to be seen as an asset in some jobs. For example, in an interview, I could say, "While I do not meet the formal education requirements for the position of reptile database manager, I have AS and I have been obsessed with reptiles my whole life. Ask me any reptile question and I will most likely know the answer."

I would like to be allowed to wear sun glasses at work in order to deal with the florescent lights, or to leave the room when someone is microwaving fish because I can't deal with the smell. I would like for people to turn to me as a source of honest opinions and random trivia. I would like people to understand that my tone of voice and facial expressions can be very misleading.

So all of this boils down to education, awareness, acceptance and understanding.



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10 Jan 2008, 11:05 pm

heres a list of what we need to do to help people in the autism spectrum- low and high functioning.

1. make bullying a crime (jail time)
2. more education about add,adhd anxiety and stress in 4th grade-till 8th grade.
3. a better support center in schools for domestic violence,sexual abuse,family crises,anti-suicide,grief support.
4. make school funner, more science, computer,art,engineering classes in school.
5. crack down on violent crimes, such as rape,sexual assault,domestic violence.
6. get rid of text book work and let students do creative assignments based on there hobbies,interests.
7. offer more independent housing units.
8. bring back our troops from war (soldiers and family are being diagnosed with ptsd,anxiety disorders and alot more. We need to fix this now!!



militarybrat
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11 Jan 2008, 1:49 pm

I like some of your list jaydog. With your first one it would make it easier to prosecute bully cases if the harrasment laws had bullying clauses in them.
I'd watch out on some of your diagnosis in number 8 though as several of the statistic are off due to premature diagnosis. You must have ongoing symptoms for 6months to a year after leaveing the stressful situation before a diagnosis of PTSD can legitametly be given. There is an intermidiate disorder, I forget its name, but it is completly natural and common for newly returned vetrens from a warzone, its when the symptoms do not lesson or disapear with appropriate help by 6months to a year that its serious enough to diagnoses a PTSD, which can also effect short term memory and such. I gotta run to class now sorry of any typos.



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11 Jan 2008, 1:52 pm

aspies will only be accepted when society realizes that phoniness and the pecking order lead nowhere near happiness.


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TLPG
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11 Jan 2008, 5:09 pm

jaydog wrote:
heres a list of what we need to do to help people in the autism spectrum- low and high functioning.

1. make bullying a crime (jail time)
2. more education about add,adhd anxiety and stress in 4th grade-till 8th grade.
3. a better support center in schools for domestic violence,sexual abuse,family crises,anti-suicide,grief support.
4. make school funner, more science, computer,art,engineering classes in school.
5. crack down on violent crimes, such as rape,sexual assault,domestic violence.
6. get rid of text book work and let students do creative assignments based on there hobbies,interests.
7. offer more independent housing units.
8. bring back our troops from war (soldiers and family are being diagnosed with ptsd,anxiety disorders and alot more. We need to fix this now!!


1. I prefer other penalties - because we would need a huge increase in jail space for this to be viable. Harsh penalties of course.
2. I'd widen that through the entire school and university spectrum.
3. Agreed
4. At which point, Jaydog?
5. This links to point 1 and is why this should be preferred as warranting a jail term, and a stiff one
6. No I disagree, although the usage of the text book does need to be modified and better used as a practical tool
7. HEAR HEAR in spades!! !
8. DITTO!!



MsBehaviour
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11 Jan 2008, 5:45 pm

Definitely more support for AS teens over what can be a hellish period, and providing safe, understanding workplaces where we can shine, not struggle. Like the Prospects project in the UK that runs a recruitment and advocacy agency for people with AS.

Rather than expecting people with AS to work harder to fit in, the NT world should learn to be a bit more accommodating. After all modern society isn't that healthy or great for NT's either, and I think everyone would benefit from a shift in pace and values. Confuscious say "If the shoe doesn't fit, why must we change the foot?"


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rossc
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20 Jan 2008, 6:48 am

TLPG wrote:
Very big subject for me, this one.

In Victoria, Australia, they are developing an Autism State Plan. I am involved in the process - I put a submission in commenting on the discussion paper, and I attended one of the seminars where heavy emphasis was placed on support systems. I was the only adult ASD person at this seminar (there were several) as most were parents or professionals. The ending point was support systems for kids (which is important) but I made sure my voice was heard as well for us adults.

I also took the opportunity to warn them off certain parts of the Internet re mercury poisoning and the associated nonsense, and I was heard in spades about that one!

My next step - while waiting for the next espect of the State Plan - is to get the federal government involved so that the other Australian states follow Victoria's lead as well as improving their responsibilities. The first Parliament of the new government elected on November 24 sits on February 12, and by the end of that two week sitting a committee on Family and Community Services should be formed. That's when I act.


Good question OP. I think that fanatical, radicalised, opinionated, disassociated, free agents representing themselves as "the voice and perspective of aspies (or autism) at large" without proper endorsement or consultation with the autistic community is dangerous.

Oh dear I quoted a post. I wonder if it has any relevance to what I just said. Probably not. Ignore. :lol: