Tag Archives | autistics

Autism Speaks is not and has never been listening despite their slogan

By on November 12, 2013 in Autism

Autism Speaks, the largest and most powerful autism organization there is with enough real power to make a real positive difference.

Ah to dream.

I mean, don’t get me wrong. They have brought about some big changes and it can be argued that they have raised more awareness than pretty much anyone else in history. But at what cost? And using what methods?

Fear. A lot of fear.

They have a long history of fear mongering with videos that depict autism as a deep voiced child predator or as an epidemic that makes moms want to throw their children off a bridge.  They spend donation money on all those research studies that you hear about in the news that links “an increased chance of autism” to such things as tylenol, c-sections, premature birth, living close to a freeway, being old and on and on and on.

There’s really no point in rehashing history. I’m sure you’ve heard it all before. I’m also sure that you’ve heard about what’s happening this week. Autism Speaks is heading up a “summit” in Washington DC where they’ll call on the government to come up with a “national plan” against autism. Yes, “against” autism.

To this end, Suzanne Wright, a co-founder wrote this piece on the Autism Speaks website: http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action

This post, this whole “action plan” is deeply disappointing. It is disturbing, disgusting, shocking and all together frightening.

Putting in bold, in 3 separate places “this is autism” is not just wrong, it’s designed to make people fear autism, hate autism and want to do what ever they can to wipe it out. I’m sure they do not deny this. It’s very clearly the purpose.

It’s a fear mongering tactic.

Now, granted, there are some that have autism that truly are in a great deal of pain, completely incapable of any perceivable form of communication and really could do with some level of “curing”, not such that they’re not longer be autistic necessarily maybe but just so that they are no longer in pain and able to function independently.

That’s fine.

But to say “this is autism” and spout scary numbers and say that “these families are not living” is basically equivalent to turning millions of people into monsters that are to be feared. If they used a child as an example of.. well, an example… that would be different. If they quoted numbers of those that are specifically that bad off, that would be different. But they don’t. They claim “this is autism” over and over again. They attempt to speak for us all. They attempt to lump in those of us that do not need to be spoken for in their big monster horror film.

Sure, Autism Speaks can go to Washington and push for help for those that need insurance and aren’t getting it, they can push for more therapies, research and medication for those that need it.

But there should ALSO be those going along with them to make sure that all the other autistics are represented and accounted for as well. That all the families that have children that need those things but don’t see their child has a monster are represented as well. That all those that are unable to speak but are still able to express an opinion are represented as well. That everyone… absolutely everyone… is heard.

All of us… that is autism. 

There is something amazing to come of this though. The comments. The autistics, the parents, the community… all of those people outraged in the comments,  they give me hope.

This is the message to Autism Speams and to the government and to the world:
We are the voice that should be heard. We are the ones that you dismiss. We are the ones that you attempt to speak for and silence and remove. But we are the ones that matter. We are the ones that need to be a part of what directly affects us.

I have autism, my child has autism and thousands of others just like us are telling you, right here, right now, this is how it really is.

All of us… that is autism.

With that, there’s only one thing left to say:

Hey Autism Speaks… it’s time to listen.

Loving life, not silent, not to be feared, not to be spoken for.

Loving life, not silent, not to be feared, not to be spoken for.

PS

I’m including some other great posts/discussions on this because I believe, as we all do, that we should have the right and opportunity to speak for ourselves.

http://autisticadvocacy.org/2013/11/asan-aac-statement-on-autism-speaks-dc-policy-summit/

http://paulacdurbinwestbyautisticblog.blogspot.ca/2013/11/autism-speaks-kidnaps-policy-summit.html

http://www.mostlytruestuff.com/2013/11/autism-speaks-speak-son.html

http://adiaryofamom.wordpress.com/2013/11/12/no-more-a-letter-to-suzanne-wright/

http://www.blog.mamasturnnow.com/2013/11/12/dear-ms-wright-autism-speaks-and-any-others-out-there-who-may-read-this/

http://theautismwars.blogspot.ca/2013/11/a-mouse-that-roars-standing-in-defiance.html

http://autismandoughtisms.wordpress.com/2013/11/13/crisis-despair-and-everything-else-wrong-with-autism-speaks-call-for-action/

http://www.decipher-morgan.com/2013/11/autism-speaks-isnt-speaking-for-us.html

http://theconnorchronicles.wordpress.com/2013/11/12/autism-speaks-does-not-speak-for-us-this-is-autism/

Comments { 14 }

When did ‘different’ become wrong? or Acceptance is not a one way street

By on May 28, 2013 in Autism
differences

There’s something about you that’s different

I couldn’t decide on which title I liked better so I just went ahead and used both.

There seems to be a divide growing between certain autistics and certain parents. Not all. Just certain ones. My fear is that divide is growing.

I cringe when I see people talk about how they don’t understand how “the camps” can’t work together. For me, I don’t understand how there can be “camps” at all. Yes, autistics are different from parents and children are different from adults but really, aren’t we all different anyway? Autistics are different from other autistics and parents are different from other parents.

In the camp of differences, we all belong together.

So it hurts me when I see people share their experiences and opinions and get attacked for it. Now, don’t get me wrong. If someone tells me the green grass is orange, I’ll be pretty quick to say “no it isn’t.” But really, do I need to? Is it a requirement of mine to correct them? Or worse, am I bound by some law that says I have to attack them for what a horrible person they are for believing it’s orange?

What if it turns out that the person has a condition, such as color blindness, that truly does make the grass look orange to them? Are they still wrong? Is their perception wrong? Do I proclaim them wrong because their brain interprets things differently than what mine and my friends brains do?

A parent is going to have a different perspective than their own child. That just has to be. I mean that whether the child has autism or not. If a parent shared a child’s perspective and was only interested in appeasing that child’s wants, then the child would have totally chocolate dinner every night, a water park in their bathroom and video games would replace school.

When I hear about a parent that “leashes” their child while out, or fences off their backyard or school yard, I find that it almost always accompanies people that don’t just share their own opinion that a parent shouldn’t do that, they outright attack that person’s intelligence, age, education, parenting skills, rationality, mental stability and oh so much more. People are vicious. They never once consider that person or their child’s past. Does the child have a history of dashing off? Into traffic? Is the child incapable of staying close by for some reason? Is the parent incapable of reaching their child should something happen? Perhaps they have a medical condition of their own such as bad knee or back?
The point is, maybe they just are way too overbearing… or maybe they have a very good reason for keeping their child safe in the way that they know how.

When I hear about an autistic that tries to share their experiences in just how hard life can be sometimes, I find that it almost always accompanies people that hate them for being negative when others are trying so very hard to make autism out to be a positive thing. Or conversely, there are those that hate autistics that share their successes and triumphs only because they’ve been trying so hard to paint autism as a very dark and debilitating thing. They don’t take the time to understand how hard it is to share these things or how hard the journey was to overcome the obstacles they did… they simply attack for not representing their own situation or for “giving people a false impression” simply because it does not reflect their own situation.

Everyone is different. Everyone’s perspectives are different. Everyone’s experiences are different. And for anyone, autistic, parent, child, etc to request/demand acceptance from others, they must be willing to do the same.

Instead of condemning a parent for protecting their child from the evils of a chocolate dinner, accept that they are different from you. Before you condemn an autistic for making the world think that not all autistics are like you or your child, accept that they are just different from you.

I am different. And I am proud. And quite frankly, I don’t care if you accept that about me or not. But know that I understand just how different you are. And I accept that too. You won’t parent how I parent. You won’t “be” as I will “be”. You won’t see the orange that I see.

If someone says something that I disagree with, that doesn’t make them wrong. It makes them different. And even if I do feel they’re wrong, it’s not my job nor my duty to attack them for it.

Different is not wrong. Acceptance is not a one way street.

Let’s accept the differences in those that we demand acceptance from for our differences.

Comments { 11 }