You are correct; there is extraneous information. The CDC won't care about political disagreements that we have with Autism Speaks. Your letter should focus on the information that Autism Speaks is providing that is factually inaccurate or defamatory. Back up your position with direct quotes, and include links. Spell out your suggestions (removal of specific links, addition of other specific links, etc.), and don't include the last paragraphs on compromise. Also, don't write a letter claiming to speak for multiple people unless that letter has multiple signatures, or is written by an official representative of an organization.

In short, your letter should look like this:

• Salutation
  
• What is generally wrong (one or two sentences)
  
• What is specifically wrong (include examples)
  
• How the problem can be solved
  
• "Thank you for taking the time to listen", or a similar statement
  
• Signature
  

Fantastic advice Semicolin. Thankyou very much.

It was, you know, late at night, when I wrote it but I'm still going to review my notes and practice my letter writing skills. If it's worth doing, it's worth doing right.

**bump**

any news on this front.

Can somebody wave the modstick to turn this into a poll?

I.E who thinks a single letter should be sent, and who thinks each person should send their own?

Or both.

Well yes, theres an idea....why didn't I think of that skyblue...


Lets try and get an 'official' letter drafted. And of course, send our own.

I shalll send one myself.

This post was last modified: 06-07-2011 05:46 AM by Lestat.

Sorry it took me a while guys, I've had a lot to do lately.
Here is a shot at an email, I haven't sent it yet, this is just my first draft, so, anybody fancy giving me some feedback, or/and doing a letter of their own?

Sorry about the formatting, I composed it in notepad, and it appears the forum ate my layout.



To Whom it may concern.

It has come to my attention, as a member of the autistic community, that on CDCs website under the section dealing

with autistic spectrum-related material, where a selection of helpful links are suggested to other websites, for

parents, professionals, autistic people that there is one amongst the many otherwise helpful ones, that is both of

great concern to me personally, as an autistic person, and to the wider autistic/Asperger's community.

The first link on the page is to Autism Speaks. This is, within the autistic community a very unpopular organisation,

and not without good reason. I am not alone in feeling that Autism Speaks is not an appropriate source of

information, especially for new parents, and that they are not at all conducive to the wellbeing of the newly

diagnosed person on the spectrum, Autism Speaks has espoused some very unpleasant things, and continues to do so,

such as the often repeated opinion that an autistic child will be the source of little for the family, but misery,

saying 'it would be a better thing, for your child to have cancer, than be autistic'. Promoting the harmful myth that

autism 'steals' children, leaving the real person trapped inside their autistic 'shell'. This, in my opinion, and

that of a great many of the autistic community ourselves, and many parents of those on the spectrum, some of whom are

autistic themselves, very bad, needless to say, dangerous advice, likely to lead new parents to believe this, and

try to force their newly diagnosed child/teen 'out of their shell'.

This will never succeed, simply because the premise behind Autism Speaks's belief on this is false. And to try is

harmful to the autistic person, certainly psychologically traumatic to the person so treated, and to whit, degrading

and humiliating.

Likewise, Autism Speaks has produced many other such pieces of advice, and opinion pieces rubbishing the autistic

community, such as the Autism Every Day video, where a mother is heard to say, with her autistic daughter present in

the room standing not far from her, how much she wanted to put her daughter, Jodie, in her car, and drive her off a

bridge.

Another thing they have done, was to threaten to bring legal action against a young autistic teenager who created a

parody website for copyright violations, in an effort to intimidate her into complying and taking down the parody

website.  


There are many more such examples of conduct on the part of Autism Speaks, that is not becoming of a place on the

website of CDC, I won't list them all here, its not my purpose simply to trash-talk them, but this shows, does it

not, the character of AutSpeaks as an organization?

Taking down the link to Autism Speaks would be a positive move for both the autistic community, and CDC, but on its

own, the positive effect is limited, it ends there. I feel more could be accomplished that would be mutually

beneficial, if we weren't to simply delete it, but instead, to work together instead, to replace that link with

others that are beneficial, and not filled with dangerous advice and hatred. When a new parent is told to have no

hope, and to write off the child, then where will the child him/herself learn to see themselves as a human being,

with hopes, opinions and feelings worth taking notice of, if you are told you are worse than cancer or HIV, or that

you will never amount to anything, or worse still, your parents talk of killing you, and of your being the cause of

their own suicide, how then, will you view yourself?

Giving a more positive outlook to parents, and by extension, to the autistic children of those parents, can only be

beneficial. Is CDC willing to work with me, and the autistic community on this issue?

Yours sincerely.

Lestat Rett.

This post was last modified: 07-08-2011 03:30 AM by Lestat.

Hoy hoy


I think this has been far too long to spend on an email. It has to have been more than a month at least.

I would take semicolin's advice on this:

• Salutation
  
• What is generally wrong (one or two sentences)
  
• What is specifically wrong (include examples)
  
• How the problem can be solved
  
• "Thank you for taking the time to listen", or a similar statement
  
• Signature
  

This post was last modified: 07-08-2011 11:02 AM by Mytelli!.

I didn't mean I spent a month on THIS!, no, took a bit over 20 minutes perhaps, much of that being to check my sources, and (uggh) subjecting myself to that ghastly autism every day video.

No, I've had labwork to do, work work to do (not 9-5 employment, rather, having to get off my arse and get some stuff done, repeatedly.

And I have a bloody bank card fraudster to track down and deal with (would you bloody believe it? but when I spoke to my bank and had the card service stopped, I told them to get the fraud squad involved, and they weren't interested, they actually had the brazen, lazy-arsed GALL to tell me to go away basically, find the number out myself through the phone company, get the pork involved and then have them deal with the pigs if they would get off their damnable hides and look...'sblood, 'tis no wonder so many people want to boil bank managers alive in their own vomit these days)

Your damn right on autsqueaks....somebody needs to go for the jugular. I don't suppose you happen to have a beer bottle handy I could borrow, by any chance? (preferably with beer in it), well I say borrow, but take my word for it, you wouldn't want it back afterwards...

I've just started doing a bit of reading into autsqueaks presence here in the UK. It appears they have shed their name and slithered, reptile fashion into a new one, rebranding themselves 'autistica'

I just wonder....wouldn't surprise me if its an attempt to dissociate themselves from the general reputation for being a right royal pack of pigfucking inbred whorebags

This post was last modified: 07-08-2011 12:19 PM by Lestat.

It was an attempt to disassociate; Autistica, to my knowledge, is almost a non-entity here. NAS is the dominant group - and thankfully, they're on our side.

From thread start to this draft it's been quite a while. I'd just do a short email if anything but up to you.

That sucks about the bank card

If Autism Speaks ever land in my country I will destroy them and wipe them out in America too.

I figured.

The only people wanting to be affiliate with AutSqueaks are vermin.

The only things that like sewage, are sewer rats, rat fleas and ye olde Y.pestis
So you don't rate them as worth the effort spent to unzip my fly to piss thereon from a great height? or, from the sound of it, even a reasonably solid cardboard box.

You just hurt yourself when you get too angry at people, even them.

I wouldn't waste anger on them, contempt is more like it Mytelli, when it comes to the likes of autsqueaks, they are bugs to be squashed if possible, trash to be spat on, not worth the emotion that would go into raging against them.

The JRC...thats something different altogether. They do piss me off, the way they treat both our people, and those with MR, that is beyond what is deserving of mere contempt, they have enough blood on their hands to deserve what must come around, having gone around already.

Why is it that Autism Speaks NEVER EVER asks us?  Aren't we the ones directly impacted by their stuid and ill-advised meddling?  I get really fed up with their dense and blinkered approach, that all AS people are hopeless tragedies and better off dead, and those of us who disagree with their mindset are elitists who probably aren't really AS anyway.  
They are annoying at best, genocidal at worst and a total blight on the landscape.  
Alison