Aspies For Freedom

But, I think, in doing that they are making EVERYONE on the spectrum look like the worst case scenario, when, in fact that is not true. There are people that can live happy, capable lives-just not the way others may want them to be- on the spectrum. That is what I don't like about those organizations. And also, by saying that there needs to be a cure, they are saying that I am broken or diseased. I am not either. I am different, but I like who I am.

But, as a parent, I do understand how difficult it must be to look towards your child's future and discover that there is a "ceiling" to how high he can achieve. All parents want their kids to be the best they can be, but when you discover that they have a problem that limits how good their best is, I'm sure that's a hard thing to cope with. And as a parent, I must support other parents searching for the betterment of their children- to what length I support it I am still working on in my own head.

From what I've read on this forum and how I feel myself about the puzzle piece is that I don't feel like a puzzle at all. It is everyone else who is the puzzle. I understand the science view you expressed of not knowing exactly where or what autism is or what causes it, that at least makes some sense... but I myself do not find myself in a puzzle piece.

You also mentioned how the world is changing. I myself see it in a different way than I think you may. I truly think the world is becoming more open to autistic persons. I think it is absolutely amazing that technology has allowed humans to talk to humans that they never would have. You can email and IM people that are placed everywhere on the spectrum. Really, at least technology is starting to get to a point where people can be more equal, where NTs can get past the physical and emotional ramifications that they might have with an autistic person and talk to them. I think its awesome. I, like many I perceive on this board, do not view a cure in a bottle or vaccine, but rather in the opening of minds of NTs in not viewing people on the spectrum as defective, but rather as human. That's the only cure I would put my money, or my children's future, in.

I'm sorry if I offend. But you wanted my opinion.

No, they just want to manipulate emotions to jerk more money out of people.  Autism Speaks and similar groups dehumanize us daily, reducing us all to "hollow" and "incomplete" creatures.  That is how they raise money--turn us into objects of pity and mere things to be exterminated by "treatment".

Okay Dogbrain,
Did you recieve treatment as a child? Are you Aspergers, or Autistic? To me they fall under the same umbrella although they have some different traits. I wouldn't want pity for my son, but extra understanding goes a long way. He is thriving with "treatment". he has a very high IQ with a lot of difficulty focusing, and he doesn't talk too much, and thats okay, but with speech therepy he has been able to express verbally his general wants and needs. This is very helpful for me as a mom. My views I think are caught in between. I don't think extermination is what I am looking for. I tend to think that your view might be a little narrow. People aren't always out to get you. The attention brought is not so bad. When I take my son grocery shopping people don't look at us like we are crazy because he is throwing some kind of tantrum. There are a lot of ways that it has helped. I think they are trying to do it for the greater good. I don't think that anyone would go to all that trouble just to make people feel badly about others, or themselves.

To reply I am going to post an exert[/code] from a paper looking at the perspectives of the autism self-advocacy movement..

"...Shwarz argues that autism is a core element of a person’s being, and unchangeable.  He expresses frustration with people that insist on lumping autistic personality tendencies with the difficulties and inabilities that can manifest, thus devaluing the autistic individual as a whole, rather than focusing efforts to improve functioning in specific areas of difficulty.  

This becomes more comprehensible when one considers the pervasive nature of autism, and what that means.  The definition of the word “pervasive” gives the description, “to become spread throughout all parts of” (Dictionary.com, 2007).  When applied to the concept of autism as a pervasive developmental disorder, it then means that autism, and its affects, are “spread throughout all parts of” the autistic individual.   Jim Sinclair, an autistic adult and advocate of the autism rights movement, better indicated the implication of the pervasive nature of autism in a 1993 article, “...it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence.”  Thus, it becomes clearer why to wish that an autistic child no longer had autism is unfeasible, because the person and their autism are not separate, and cannot BE separated.  

These realizations illustrate the reasoning behind the outrage and offense that autistic individuals experience when viewing the vast majority of the public information and representations on autism.  It seems no wonder, considering the examples.  One parent describes their experience with autism media displayed one year during the month of April, the official autism awareness month:

Public service announcements liken autism to being kidnapped.  A government Web site defines autism as a "devastating scourge." An autism "expert" decrees that autism is worse "than Sept. 11 and AIDS combined." An Autism Society Canada board member proclaims that autism is worse than cancer — because people with autism have normal lifespans. (Gernsbacher, 2004)

Given the descriptions cited above, their objections appear justified."
(Freeman, 2007)

I hope that this maybe gives you some insight into why some individuals so greatly oppose the attitudes and experiences presented in the media regarding autism.

My main problem with Autism Speaks is that they claim to be the ONLY voice for Autism, my problem with that is that not only do I already have a voice, but so do thousands and thousands of others.  I don't want a bunch of people without Autism to be speaking on my behalf and telling people that I want to be cured.  Also, as has been mentioned earlier, Autism Speaks works hard to make Autism look like a tragedy and an epidemic, it is neither of those.  They take the kids with the absolute worst case scenario, kids who can't talk, bang their heads on the wall, and never socialize, and they say that THIS is Autism, not that these are the worst cases of Autism, they say basically that EVERYONE on the spectrum is like that.  They show videos of kids having a bad day and make it out to be that that is exactly how they are all the time.  They also show kids sitting there quietly and imply that they are just sitting there braindead, which is definately not the case.  Rather than educate the public which on a whole, doesn't really understand Autism, they instead give the public a drastically wrong view of it, and thus get the public interested by telling the public that it's a tragedy which absolutely no good can possibly come from.  That thus gets the public motivated to see us as diseased and instead of them wanting to get to know us better, it gets them to pity us instead, then they want to help us by doing the only thing logical to them, which is try to make us just like them.

If you're still behind Autism Speaks, take a look at <a href="http://autismspeaks.org/sponsoredevents/autism_every_day.php">this</a> video (the 13 minute one), You'll get to see the Senior Vice President of Autism Speaks, Allison Singer, saying how she wanted to put her Autistic daughter in the car with her and drive off the George Washington Bridge to kill them both, and the only reason, the ONLY reason she didn't was because she has a non-Autistic daughter that would have to grow up without a mother.  And when you watch it, look for the girl in pink right behind Allison, yep, while she was saying this, her Autistic daughter was right there, not 4 feet from her.

I don't know about you, but I don't want an organization with a person like that as their Senior Vice President to be talking on MY behalf, and saying that I don't have a voice of my own.

Hi QT kids,

Can you stand yet another opinion?

First, I am so happy that you are seeing your son make progress and are able to understand him better.

While I do despise the propaganda campaign of A Speaks, I am very interested in improving the overall well being of all my children.  Our society values peeing in toilets, therefore I have (more or less!) taught mine to use them.  Our society doesn't value, however, diversity, and I refuse to teach them that there is one "right" way to live, look, or be.

ASpeaks refers to ASD's as an "epidemic" (AS isn't contagious).  Autism with speech only was listed in the DSM in 1994; that is a major reason there are more diagnoses.  Also, due to media advances, we are also more aware of just about every possible human illness, disorder, or quirk, not just AS.  It was underreported before.

I take issue with ASpeaks because the focus is on the woe-is-me parents, and not on what is best for the child.  For example, in the Autism Every Day video, how will the AS daughter feel later, as an adult, when she sees her mother complain so bitterly about her very exisitence?

I suffered MISERABLY, unspeakably, horribly as a child and young adult due to the teasing and osctracism of people around me.  Yet, I am very bright, capable, accomplished person who has established a loving, long term marriage, and parents (reasonably well? : ) three sweet, happy, quirky children.  I am a loyal friend and a community volunteer.  More importatnly, I'm so grateful to be alive.   If the genes are determined, like ASpeaks wants, people like me might not have a chance to live at all.

If we "gene-out" autistic traits, we would probably not be using the internet.  Probably not read Emily Dickinson's poetry.  Probably not understand the theory of relativity, or experimental economics.  

I am glad for you that labeling your son's behavior has brought more public support for your challenges. I am personally aware of the extreme emotional needs of a child with sensory issues.  But shouldn't we be a society that is tolerant of differences in the first place?  Shouldn't we "declare war" on judgmentalism?

That's more than $.02, so I'll stop there...

Here I go again.... Jumping in without reading the thread....with a quick comment...

No offense, just another view....

And I identify with the comments above. The stigma created by publicizing the worst with sensationalism errks me...

I'm leading a "capable life", but would like more understanding about how I am not "the way others may want them to be". Thanks for saying that. My only complaint is your use of absolute comments like "EVERYONE". Simply not true. We are individuals...

Respectfully, Beammeup

Hi Crash Test Mommy,
Thanks for getting back to me. It seems I may have struck a nerve. Ooops! Because my son has an ASD diagnoses he recieves services that would cost me money that I do not have. Actually it would become thousands of dollars a week. I am all for letting my son be the person that he is. I have no problem with that. I just think that it doesn't hurt to have research on what the cause may be. I do believe that at some point there was an underdiagnoses of ASD. I also believe that it doesn't hurt to have kids who can be themselves , but also function in everyday life situations and not completely melt down. Lets face it...If I let my son grow up and don't teach him that when he goes to work or school that he cannot hit, bite, kick, tantrum etc...just because things didn't go his way, or someone changed a display in the store then he will never be able to hold a job. This of course is just an example. With treatment  ( the treatment on here that everyone seems so against) my little boy no longer bangs his head into walls and floors. I am no longer bit so hard that I look like a battered woman. Why would we not want to inform the public about this. People should learn about autistic people if anything because we all have to live on earth together.
This is an epidemic.
The definition makes sense:In epidemiology, an epidemic (from Greek epi- upon + demos people) is a disease that appears as new cases in a given human population, during a given period, at a rate that substantially exceeds what is "expected", based on recent experience (the number of new cases in the population during a specified period of time is called the "incidence rate"). (An epizootic is the same thing but for an animal population.)
for the time being the amount of people diagnosed with autism happens to be exceeding the original expectaion. I respect your opinion, and I do believe that everyone should raise their children how they like, but teaching the general public about this is important. Not for pitty, but because everyone should be a little more open minded.

Hi Everyone,
There are so many responses that I can not get to reply to each one. I will simply say this, None of you like what Autism Speaks has to say, and that is very clear, but has anyone done anything about it. They are a large force that will not just go away. Has anyone made a documentry, I think there are sites like you tube that will host them, or public speaking in order to verify your more realistic  view autism. I reccognize that everyone is entitled to your opinions, but wouldn't it be good to go out and say that you are autistic, and that you don't want to change, and shouldbe excepted for who you are. The public would probably benefit from this.

Yes......... And perhaps with a loud  Roar!!!

There I go again not having read the thread.... I don't even know what "Autism Speaks" means (new here, still learning forum etiquette).  But I agree to this statement with a "ROAR". Someone help me out here. Applause please.....

Has apathy set-in after banging the doors of ears that won't listen?

I'm way off the point again Right?  Off to another thread......
Don’t worry... I’m  not losing it.... Just had an attack of Robin Williams syndrome, just wish it would get more funny... Hah!

regarding my last post...

oops.... forgot my comment.... Need to have something to READ...

No offense. I'll read first next time...

Thank you for the link...

Regards, Beammeup

I don't think it's an objection to informing the public about autism, it's the idea that it's represented in such an overwhelmingly negative way.  I'm not saying that there aren't very difficult issues that often go along during the childhood of, and throughout, an autie's life, and that these shouldn't somehow be addressed.  I can't imagine that any individual really wants to feel compelled to hurt themselves or others.  However, there are other very valuable characteristics that go along with being autistic.  It seems that the media continually endorses the idea that if you find out your child is autistic, you're in for a life of hell, ripe with despair.  But where are they showing the positive and great things that come along with these incredibly unique individuals?  I mean, that must be painful to see - a group you belong to represented so publicly in such a flat-out negative way.