(This is a ranty post, so I apologize for the negativity...)
I just heard about Autism Speaks' latest shennanigan: suing an autistic teenager for creating a parody of the Autism Speaks website.
Main story here:
http://autisticbfh.blogspot.com/2008/01/autism-speaks-silences-autistic-child.html (Autism Speaks Silences Autistic Child)
It seems that a 14 year old autistic who goes by the screen name "Kelly" started up a website called NT Speaks, which was a parody of the Autism Speaks website. It suggested that certain annoying NT behaviours might need treatment.
Autism Speaks, who claim to be working toward helping autistic people communicate and be independent, responded by having their lawyers threaten Kelly with a lawsuit! http://www.aspiesforfreedom.com/showthread.php?tid=11704
They wanted $90,000.00 for "funds lost". Once they found out that Kelly is 14, they rescinded that but put some new restrictions on the site: it would have to be hosted by Autism Speaks http://www.aspiesforfreedom.com/showthread.php?tid=11706
One 14 year old proves he or she has good communication skills and has enough independent (not to mention creative) thought to create a website that speaks against Autism Speaks. I guess they don't like independence and communication if said autistic person is not 100% supportive of them.
More can be found here: http://forums.fark.com/cgi/fark/comments.pl?IDLink=3344313
I for one wish I could have seen this website and think it is a shame that this happened. But...hope is not lost: Someone put a graphic of the site's homepage here http://www.ntspeaks.com/ and here http://www.aspiesforfreedom.com/ntspeaks/
(Here's another interesting graphic: https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgymJEYjnfWcmR6_sFuHdvU-Ha8OaeSxTQDrRGrDD7S7mq_pkKw5Ca6c4DTqXxQUm-xCY9kwO1O9jg713ELV69BkkZCGHNmBKOoRCMnJ8iHaaTl-iqMO97UVsOqlWHPgvE0DHiLsmspJg/s1600-h/IG+SPEAKS.bmp) http://aspergersquare8.blogspot.com/2007/04/adbusters-style-promotion.html
I'll be interested to see how long it takes Autism Speaks to sue...
Honestly, why are societies so surprised that many autistics don't agree with them? Why are they so hell-bent on ensuring autistics do not have any part of their operations? (Many societies will not allow autistics on their governing boards)
Would the logical solution not be to actually listen to what autistics are saying and perhaps change their approach and make it more beneficial to autistic people? (I thought autistics were the only ones that were supposed to be resistant to change, according to these experts and professionals...I'm seeing a lot more evidence toward the contrary as of late)
Perhaps that would just make too much sense? Is that the problem?
One has to ask "Just who are these societies really helping?" "Who are their target clients?"
I work in a client-centered position: my job is to help people who use the content management application that I administer. Part of my job is to provide ways to make this application easier for users by writing manuals or explaining the program to them.
Another part is forwarding client concerns and suggestions to our developers. Not all of the requests can be accommodated due to the limitations in the program, but if they can be accommodated, they are as soon as possible.
We know who our clients are. We are here to address and respond to our clients' needs in any way possible. We have client user groups who meet regularly and let us know what they like and don't like. We respond by doing what we can to make things better.
Now...looking at what these "societies" are saying, their target clients are supposed to be autistic people. They want to help autistic people be independent. They want to help autistic people communicate. They want to make life better for autistic people.
They want to help autistic people...or so they say.
So...when autistic people - their supposed target clients - communicate and show independence...these societies stop listening! Why is that?
Autistic people are pretty articulate in writing, if not in speech. They're pretty straightforward when telling people what they want, how they experience the world and what would really work well for them.
What's the problem here?
Where is the communication breakdown?
The requests and comments given by autistic people are in plain English.
Why are these people neglecting their so-called duty? Why don't they seem to get it?
If I stopped listening to my clients or did not accommodate their needs and requests, I'd be fired on the spot. I'm autistic and I understand that.
Now I hear this from parents and societies:
"My kid or client is not like these high functioning people who speak against the societies" -
Sorry...what's the difference between your kid and other autistic people? Yours smears feces? So do some of these people who type these messages. Yours doesn't talk? Some of these people don't talk either. Yours depends on others for support? So do some of these folks. Yours has trouble with social skills? Join the club!
Yes, we all have differing levels of ability, etc.
Oh, I see what the problem is...these people are adults who have opinions and actually type them out as opposed to a small child who is.... well ....a small child! How many little children can articulate this stuff?
I say this: Wait a few years, teach your kid to type and let him or her get online with other autistics. Let's see what they have to say as the years go by. You'll be surprised.
Until then, folks, why not actually put your egos aside and perhaps listen to what autistics have to say? They might have some ideas that you haven't thought of that might actually help your kid.
"But they're so angry!" you say.
Well ... wouldn't you be?
Imagine having something like diabetes and being told that you're worthless, you must be eradicated and then the professionals don't treat your diabetes appropriately? You're just forced to "act like a normal person".
Imagine being forced to deny your needs and be something you are not...just to pacify your parents who get frustrated because you are different.
Imagine being compared to cancer or having loved ones like youer parents say they'd rather you have cancer so that you would just die instead of them having to live with you being different.
Imagine constantly hearing how horrible you are on the news or the internet just because of a medical condition.
Imagine your family always treating you like you are a constant pain in their ass.
Imagine being talked about like you were not there, or having people assume that can't think or feel because you do not respond the same as everyone else.
Would you be happy?
Here's a line my ABA therapists used to use on me all the time: "How would you like it if people did that to you?"
How would you like it?
Why must we be silenced?
Who are these people really helping?
Not us apparently...
