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philosopherBoi
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27 Feb 2009, 6:01 am

So I have been thinking its time we push the news outlets like CNN, ABC, FOX, etc. to put us the autistic people on the air, so our opinions on autism can be heard.


This is my message to the news outlets please tell me what you think, and please get your butt in gear and start sending them e-mail etc. that we want our voices heard.

When talking about autism you have doctors, politicians, parents of the autistic, celebrities, and representatives of so called advocacy organizations come and talk about autism but you never bring autistic people on. By not having people with autism talk about autism your only covering half the story, because those of us with autism have different opinions about autism than those who talk about autism but are not autistic. Also, many people with autism despise many of the people and organizations that are commonly on the news talking about autism. A good example is the organization autism speaks here is a list of reasons

1.) No autistic people are board members and currently no known autistic works for autism speaks.
2.) They support finding the “autism gene(s)” so parents can have doctors preform prenatal tests so they can abort autistic fetuses.
3.) Suzanne Wright one of their founding members said, "We’re now playing catchup as we try to stem the tide and ultimately eradicate autism for the sake of future generations. If we continue our current trajectory, we’ll get there in my lifetime." If she had said the exact same thing except instead of saying autism she used the word Jew, gay, Muslim, Christian, black, Mexican there would have been riots but because it was autism nothing ever happened.
4.)Autism Speaks had a video made called Autism Everyday and one of the mothers named Alisn Tepper Singer, said “ but I remember that was a very scary moment for me when I realized I had sat in the car for about 15 minutes and actually contemplated putting Jodie in the car and driving off the George Washington bridge.” Autism Speaks never condemned what Alisn Tepper Singer said.
5.)They threatened legal action against a 14 year old autistic blogger named Kelly because she created a parody site called NTSpeaks.org. (NT is a term autistic people use to describe someone who is neurologically typical.)
6.) They threatened a company with legal action for agreeing to make a shirt for a blogger named Zach which said “'Autism Speaks' can go away I have Autism I can speak for myself.”
7.)They imply that most autistic people are low functioning however a study done in Sweden by Bjorn Kadesjo, Christopher Gillberg, and Bibbi Hagberg found that 1 out of every 250 autistic people have Asperger's Syndrome so when you take into account the CDC estimates that 1 out of every 150 people are autstic you find that 60% of those with autism are actually high functining. However the percentage of autistic people who are high functioning is unknown because those diagnosed with High functioning classic autism is not currently know.
8.) Autism Speak has compared autism to deadly disease such as cancer or polio.


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Last edited by philosopherBoi on 27 Feb 2009, 7:09 am, edited 1 time in total.

BlackjackGabbiani
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27 Feb 2009, 6:58 am

Well for one, you seriously need to spell-check. "Sweeden?" And how about formatting and capitalization?

Another point to work on is that not everyone who would want to find out prenatally if their kid will be autistic would do so with the intent to abort. It takes time to find proper schools even for NT kids, and there *are* schools that require the kid be registered even before they're born, so finding out early about any educational needs would be an enormous boost. The issue is finding the intent so that it's for the good reasons and not the bad ones.


Perhaps appeals could be made to autistic celebrities, like Dan Ackroyd, to appear in pro-autism ads.



philosopherBoi
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27 Feb 2009, 7:05 am

BlackjackGabbiani wrote:
Well for one, you seriously need to spell-check. "Sweeden?" And how about formatting and capitalization?

Another point to work on is that not everyone who would want to find out prenatally if their kid will be autistic would do so with the intent to abort. It takes time to find proper schools even for NT kids, and there *are* schools that require the kid be registered even before they're born, so finding out early about any educational needs would be an enormous boost. The issue is finding the intent so that it's for the good reasons and not the bad ones.


Perhaps appeals could be made to autistic celebrities, like Dan Ackroyd, to appear in pro-autism ads.



Hun I was in a hurry, I was sleep deprived so yeah I was not at full capacity. Also I am sorry but I don't trust people when it comes to aborting babies based on what prenatal tests say, over 90% of all fetuses found to have down syndrome are aborted, with the negativity surrounding autism it would be another repeat of that.

I am pissed with you it is not because you pointed out the errors, its because of the offensive way you did so that pissed me off. BTW I edited my first post through a spell checker so its now officially perfect :!:


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lelia
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27 Feb 2009, 12:27 pm

Both of you above have interesting ideas.



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27 Feb 2009, 12:37 pm

Being a bit jaded, I think the primary purpose of the type of organizations of which you speak is to make money. If they admitted that most autistic persons are high functioning it would stem the tide of donations. And, this would affect their bottom line...cash. So being the big business many charities are these days, I don't see a lot of change coming soon. But, it is a terrific idea.


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27 Feb 2009, 2:31 pm

I think that it is high time that autistic/Asperger syndrome people are heard on this issue from our point of view for a change. We are never listned to and neurotypical people always think that they are better than us and can be patronising so and so's I'm as a rule I do not like them; only a few I can say I can like. The reason is Aspiphobia and the excuses given for it. :idea:



BlackjackGabbiani
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28 Feb 2009, 3:01 am

philosopherBoi wrote:
Hun I was in a hurry, I was sleep deprived so yeah I was not at full capacity. Also I am sorry but I don't trust people when it comes to aborting babies based on what prenatal tests say, over 90% of all fetuses found to have down syndrome are aborted, with the negativity surrounding autism it would be another repeat of that.


Except autism and downs are two very different things. Not to mention that autism isn't accompanied by a shorter lifespan. You really can't gage what people will do in one situation off what they'll do in another.

Quote:
I am pissed with you it is not because you pointed out the errors, its because of the offensive way you did so that pissed me off. BTW I edited my first post through a spell checker so its now officially perfect :!:


What "offensive way"? Saying that you seriously need to work on that formatting because it looked unprofessional?



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28 Feb 2009, 11:37 am

You do need to get your letter word perfect. For example, you write "your only covering half the story", but it should be you're, not your. A spell checker won't catch that, so having someone proofread is always a good idea.

This week the local entertainment weekly had an article on autism, that was about a conference for parents. They did not quote any autistic people in the article, so I sent them this email:

Quote:
That article on autism wasn't bad, as articles on autism go. It was actually kind of nice. But did you know that autism affects individuals as well as families? There are individuals who even have autism themselves! It would be nice if journalists made it a habit to include comments from autistic individuals in articles on autism as a matter of course. It might not matter so much in articles like this one, but when it's a habit to leave us out, it can sometimes cause huge problems for us.

Oh, and since I'm autistic, I'll interview myself. Q: What do you think of this conference? A: Never heard of it. Do they have anything for autistic people or is it just for parents? And is it affordable for people on disability?

"Nothing about us without us."

Anemone Cerridwen, autistic

Vancouver
xxx-xxx-xxxx [my phone number, since they ask for it]
As an autistic person I prefer to be contacted by email, should you need to contact me (makes a huge difference in understanding conversation). Thanks.


They ask for full name, city, and phone number for all letters to the editor. They also have a limit of 250 words per letter.

You might want to take word count limits into account when you write these places. You also might want to take most of the rant out and custom-tailor each letter to each media outlet, discussing a recent article they've done on autism, and how it excluded us. Just a thought.

I have no idea if they'll print my letter to the editor or ask about it, but if we ask, over and over and over, for them to always include autistic people's points of view in any story relating to autism, maybe they'll start. And if they keep discovering that we don't know anything about these conferences etc., maybe they'll start to realize that there's a story there - that we're excluded pretty much across the board in most places.



philosopherBoi
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28 Feb 2009, 12:39 pm

People listen up I was half asleep because I had not awake for 18 hours, and kinda irritable when I did the letter, I think I did really frakin good for the state I was in so stop with all the judgmental crap cause your pissing me off.


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audioeyes
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28 Feb 2009, 12:59 pm

Guys I think Nathan was asking for comments only on the content of his message. At this stage, spelling/appearance etc is not important. And as he said - he was tired at the time of writing, so it's a draft copy at the moment.

Much love,
Rikki :)



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01 Mar 2009, 5:13 am

I liked it, the issue is not in the details, but in even reporting.

While the scare story has been used on both sides, abortion being the future, I disagree.

The parents who could be told such, if they asked for tests, would likely be Spectrum themselves, and so would any child they had.

A family history of Cancer, Heart problems, many other genetic conditions, has never stopped people from having children.

A second point of view is Autism is a cover for many conditions. Too much difference for it to be one thing.

Our public image does seem to be the banjo player in Deliverance, and Rainman tried to cast us in a better light.

We have an image and public relations problem.



BlackjackGabbiani
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01 Mar 2009, 9:08 pm

philosopherBoi wrote:
People listen up I was half asleep because I had not awake for 18 hours, and kinda irritable when I did the letter, I think I did really frakin good for the state I was in so stop with all the judgmental crap cause your pissing me off.


No one is being "judgemental". We're reacting to the words you wrote, and that includes the incorrect ones. If you notice, we're *agreeing* with you, just saying you need to frame it better.



...banjo player in Deliverance? I thought the stereotype of everyone from that movie was "ultra Redneck"



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04 Mar 2009, 1:29 pm

I got a reply back to my email. Here's what the person said:

Quote:

Thank you for contacting us about Gail Johnson's article. I am interested in interviewing you for your thoughts about autism.

Perhaps I'll start by asking you to describe your circumstances and what you would like to convey to our readers. Feel free to write as much as you like.

Thank you.


I'm thinking it could be quite easy for such interviews to turn into pity parties, and that it's important to keep it general and political. I'm still thinking about what to include in my reply. Fortunately I have some rants posted and don't need to repeat any of that. That should help me keep things focussed on inclusion as a general principle.