Can We Really Trust AUTISM SPEAKS?

Why Autism Speaks is No Good for Autistics

Okay, so you want to donate to Autistic Charities. Good for you!

Autism Speaks isn't one of them.

I could just tell you about how every single Autistic individual I have ever spoken to seems to hate the "charity" with a passion. But if you want proof...

Much of their "education" on Autism is deliberately demonizing Autism / Asperger's Syndrome, which as you can imagine is the last thing ANYONE Autistic actually needs. Their most famous video, Autism Every Day, even features a mother who admits in front of her autistic daughter that she had contemplated carrying out a murder-suicide because of her child's Autism.

(Ironically, only a few days after the video's release, one mother did just that to her own daughter. Check out "Karen McCarron" below.)

There are no Autistic members in any controlling position of Autism Speaks, only parents and other related family members. As you can imagine, the divide between "Being Autistic" and "Putting Up with someone else's Autism" is a BIG difference, given how social slights and other communication issues are part and parcel of Autistic behavior, even though it doesn't have to be. As a result, with such lopsided representation, they can hardly presume to speak "for" Autism in any sense.

There exists a very vocal contingent of Autistics online who are appalled with Autism Speaks right down to the choice of logo (They don't appreciate being called "Puzzles", to be honest.) In fact, even MENTIONING Autism Speaks will spark flame wars in Autistic Communities, backed up by plenty of evidence from shunning at Autism fundraisers and conventions to the sheer lack of support they provide current Autistics in favor of long-term "research" that allows them to splurge on PR stunts and lavish corporate expenditures without having to show any proof of the progress they're making with all that money, while true Autistic Charities are choked for funds because it all goes to Autism Speaks.

Fortunately, there ARE alternative charities which would have a far better impact. The Autistic Self-Advocacy Network and the Dan Marino Foundation are the best alternatives I can recommend to you. Please consider them as your charity to support instead of "Autism Speaks".

I assure you, Autistics prefer to speak for themselves.

Happy Autism "Awareness" Day!

emember, "Awareness" is a very empty word unless it's coupled with "Action".

Please take action today by supporting your Autistic Chartity of choice -- as long as it's not Autism Speaks!

What do you Think?

(Relax, you don't need an account to voice an opinion! Just type it into the box and let it fly!)

Autism Speaks is Evil! Autistics are People too!

Peter A. 23 months ago

I myself have never had a problem with the 'Autism Speaks' charity (if that is what it actually is), having visited the site a number of times with the express purpose of uncovering many of the more controversial aspects of it that I had been informed about, but failing to find anything.

In any case, living with autism (even the relatively 'mild' version that I have - i.e. Asperger's Syndrome) is pure hell. All the things that others take for granted (ex. a career, family, friends) are, for the vast majority of us, an impossible dream. The constant misunderstandings, sensory issues, clumsiness, and other limitations that go along with this handicap are enough to drive me, even at the best of times, to despair and self-destruction. The sheer frustration of it all is just overwhelming, and if anyone who isn't like this thinks they have any idea as to what it is really like, they are deluding themselves. Being this way is just far too frustrating.

One commenter above said that it 'sucks', and yes, it certainly does. If 'Autism Speaks' is truly funding research that will help in the development of a cure for this curse, then I say 'Go for it!' It's easy enough for most people who are not like this to pontificate on their soap-boxes and say (stupid, in my view) things like, 'It's who you are, so don't try to change it. Accept it', but they have NO idea how awful A.S., and autism in general, truly are. Being this way is NOT who I am; this affliction is a prison of the mind, an obstacle to personal growth and development that I would not wish on my worst enemy.


Emma 2 years ago

It makes me so sad that they want to come up with a prenatal test for autism. I have heard that, unfortunately, 90 percent of people with Down's are aborted, and the numbers will likely be similar for autistic people if a test is developed. How sickening is that?

I am grateful for my own life, and for the lives of my friends who also have autism or other disabilities. We deserve to live just as much as the next person. I would never support an organization that aims to stop disabled people from getting to live life. I am okay with abortion in the general sense, but I'm not okay with picking and choosing. I feel it's a slippery slope that begins with disabilities, but before long, people will be aborting because their baby has blue eyes instead of green, or because they will be half a foot shorter than the rest of their family. None of that's right, in my opinion.

Sure, things are more difficult with a disability, but most of us love our lives even if they aren't "normal" lives and we can't do many of the things our peers can. Just give us a chance!


Unknown 2 years ago

I'm an aspie who is over all tired of listening to "Austim Speaks" views and stupid program.This is the last thing you should donate to if you want to help people with Austim. The people in this program pretty much only want money or were sadly dis lead. The people who run this "Friendly asbalishment" (yes this in "..." Is sarcasm but you probably already knew) would like nothing more then to completely change are personality just for money. Yea there accuse is that we suffer... the only reason I ever fill like I'm suffering is stuff like this that I frown upon. This program treats people like me as if we were idiots when we are clearly not. I my self am in the National Junoir Honor Soctiey. Please don't donate to "Austim Speaks" ( more like let parents of kids with Austim Speak about something they hardly understand or if they keep taking "Austim Speaks" serouisly will never understand )


Unknown 2 years ago

I'm an aspie who is over all tired of listening to "Austim Speaks" views and stupid program.This is the last thing you should donate to if you want to help people with Austim. The people in this program pretty much only want money or were sadly dis lead. The people who run this "Friendly asbalishment" (yes this in "..." Is sarcasm but you probably already knew) would like nothing more then to completely change are personality just for money. Yea there accuse is that we suffer... the only reason I ever fill like I'm suffering is stuff like this that I frown upon. This program treats people like me as if we were idiots when we are clearly not. I my self am in the National Junoir Honor Soctiey. Please don't donate to "Austim Speaks" ( more like let parents of kids with Austim Speak about something they hardly understand or if they keep taking "Austim Speaks" serouisly will never understand )


anonymous 2 years ago

no more Speaks! I feel bad for the autistic people who are commenting on the second option, because they probably did not grow up in an environment that accepted their difference of being autistic. If they were accepted for who they were, I bet they would have been commenting on the first option. I wish people knew how much their talk of "autism is a disease" can really effect autistic people.


anonymous 2 years ago

Hi:

I am helping to publicize a site related to deafness,

The Brainy Deaf Site. It's worth a visit.

If you like it, please tell your brainy friends about it.

www.TheBrainyDeafSite.com

Thank you,

Nina (Marino)


anonymous 2 years ago

Every year, around this time, my school gives a presentation to the "good kids" (who are really just kids who are not on the autism spectrum) about how Autism is so bad, and that we should support Autism Speaks. And considering that earlier that year (it was my first year at Elsie Johnson) the teacher straight up announced (without my permission) to everyone in the class that I had Autism. This lead to ridicule and hate. We are not circus monsters! So stop treating us like we are!


anonymous 3 years ago

How do we look past the idea of having some kind of prenatal screening to encourage people to weed out autistics like they do downs? I cannot in good catholic conscience support that agenda. My son is a blessing and is a fine addition to my life. Couldn't imagine it without him now.


anonymous 3 years ago

@the anti-circle jerk To be fair you are right but then again most "normal" people are not much better so.


anonymous 3 years ago

@generic heartwarming.... really heartwarming.


anonymous 3 years ago

I'm a millionaire with Aspergers, and find NT's simple, relying on gestures.Their standards are that of the herd in majority, not of the elite. Do like Bill Gates and run these NT simpletons like worker ants...that's all these "normals" can do really. Autistics have Eisenstein, NTs have Paully Shore....

Autism Speaks is like the KKK, and anyone supporting this group is most likely an IQ 90 NT trying dealing with an IQ 160+ autistic. For a rare few it's a disability....to the rest of you we are your masters.


anonymous 3 years ago

As a teenaged girl with Asperger's syndrome, I have to say that Autism Speaks is a bull-crap organization that demonize those ASDs by treating the spectrum like they're disease or something to be cured or have a cause (Rhett's syndrome is an exception but it is very rare and, at best, hard to diagnose, however there is no cure for that), when they aren't. If anything, this organization only makes creates a stigma when Autism acceptance would be just fine and it would really do us some good. We're people, too, not something that should demonized because of this crap that this organization and many others are feeding to everyone.


anonymous 3 years ago

I agree. I found their tax records and they donated very little to actually help children and families that are impacted by autism. I am an autism specialist as well as a therapist. Most people have no idea the impact of autism on the individuals themselves, siblings and the whole family. Currently, I am trying to purchase land to build a lifelong ranch for individuals with autism. As I am new to the fundraising side, I tried to contact Autism Speaks for just some "knowledge." No response at all. What does that tell you? I just want the children I have worked with in the past and currently to have a home, a job, friends, animals that will be safe and simply home when they age out of the system. But, as for Autism Speaks--not even a word of how to contact people, go forward to help those that will not be able to help themselves. Go figure. BeccasHeart Ranch


anonymous 3 years ago

Autism's something that people just plain come into the world with, and nobody knows how or why that happens. Despite all the research being on done on how to prevent autism, there's no way to prevent it from happening.


anonymous 3 years ago

We need not just awareness but acceptance


anonymous 3 years ago

Autism Speaks, I am autistic. Your comments affronted me because you say that autism is a reason to be pitied. Not so! Our difficulties are different than yours, but you think we have all difficulties. I am in two advanced classes and my teachers don't use my autism as an excuse to treat me differently. I am treated like any other student. I did not win a fine arts award because everyone patronizes me. I won it because I worked hard and had the guts to audition for the LVYO even though this is my first year of flute playing. Autism Speaks, you look at me like I will never have any potential. Look at me now. I play the flute in beginning band, am an A's and B's student, and have many friends.

To those who think autism is some excuse to be pitied and patronized, I beg to differ. Autism magnifies the senses and we get overloaded. Either that or it diminishes the senses and we want more and more. I am a bit of a vestibular seeker, so I love roller coasters. Why should you pity me for that? I am treated like any other student in school, even in advanced classes and band. However, I go to resource class for tests. The teachers there are very helpful.

I don't want first chair. I just want a chair.


anonymous 3 years ago

I am diagnosed with PDD (It is part of the autism spectrum). I am fine with it. When media talks about ASD as caused by pollution, or something wrong in mothers, or vaccines, I feel very offended. ASD should NEVER be considered diseases, mainly because the life expectancies are COMPLETELY THE SAME, that the ones for neurotypicals.

I DON'T believe they may be caused by factors mentioned above, because IF THAT WERE SO, the life expectancies would be affected, the symptoms would be very different in each individual, there would be life threatening symptoms and body abnormalities, etc.

THAT'S NOT THE CASE. Instead, we are fine and healthy. We have no discomforts, no pain, no aches, etc. Instead, we have a mind that neurotypicals will never have. For example: we can notice details that they don't notice. We can articulate ideas in a manner that is difficult for them. Among other advantages.

I do not deny that there are some disadvantages. For example: Reacting desesperately to something, some behaviors that disrupt social interaction, and some obsessive ideas, but we can overcome them if we put our minds to it.

I just believe that the Autism Spectrum is just a natural human variation, like blond hair, black race, or asian eyes. It is a natural difference that manifiests on mind, behavior, and perception of the world.

If scientists "find" something that "may cause autism", the stuff they "found" is NOT autism. It's just a PHENOCOPY.

A Phenocopy is an externally induced feature in an organism that, by coincidence, IMITATES a natural genetic feature.

Congratulations: Temple Grandin, Jim Sinclair, Albert Einstein(Rest In Peace), Mozart(Rest In Peace), Ari Neeman, Bill Gates, etc.

They succeded in Autism Spectrum, but ignorance still in the world. People still thinking that autistic people cannot succeed in society.

I FEEL VERY ANGRY when people talks about autism, and compare it to diabetes, AIDS, cancer, or a mortal or debilitating disease.

I EXPLODE INSIDE, when I hear in media, that prevalence of autism is higher than diseases mentioned previously, and they speak it in a tone of sadness and/or fear. Autism DO NOT affect life expectancy, NOR is life threatening, NEITHER mortal.

AIDS, cancer and diabetes, ARE THE OPPOSITE to this statement. Parents SHOULD be grateful that their children have autism, but NOT the others mentioned previously. The previously mentioned ARE diseases. Autism is NOT a disease.

I'm afraid that in the future, if an autistic person still healthy at an elder age, people will see it as a Super-Mega-Miracle. It should not be seen as such thing, because Autism DO NOT mess with life expectancy. It is like black race, blond hair, or asian eyes.

I'm also afraid that if an autistic person get sick before it, people begin to blame Autism.

I Repeat: Autism DO NOT affect life expectancy.

If an autistic person still healthy when elderly, it will be THE SAME as if it were black, blond hair, or asian-eyed. The same an autistic person may have longevity, a black race person may have it too. A blond hair person may also last healthy at a higher age. An asian-eyed person of course, may be healthy at a higher age.

If an autistic person gets sick before it, it of course will be THE SAME that if it where black, blonde, or asian.

Both for Autistics and for Neurotypicals, it depends, on exercise, healthy diet, safe body weight, sleeping the hours needed, among other details.

Both for Autistics and for Neurotypicals, if they don't take care of their health, of course, when elderly, they would be on a care home, or on the pantheon.

I am, a strong believer in Neurodiversity. I encourage parents of Autistic Children to Interact Strongly with their children for very long periods of time, inmediately when they get the diagnosis, in order to maximize their performance and functionality, so they can live independently.

For a low-functioning diagnosis, it's very difficult for them to live independently. In this case, I encourage their parents do the same mentioned above, but the more strongly as possible, for the more long periods of time as possible, in order to make their children live the more independently as possible for them.

The more early the intervention is, better results. The more strong the intervention is, the more independently autistic children can live. The more long the session is, the early they develop skills for independent life.

Autism Speaks Is spreading the WRONG idea of that autistic people is sick, and needs a cure, and another WRONG idea of that autistic people is consumed by autism, among other wrong ideas.

The cure is a stupid idea. They raise champaigns claiming that autistic people is a horror for parents and society. They are dehumanizing the people on the spectrum. The "I am Autism" video was the last straw. With their vision, they are insulting Me, they are insulting a friend I have (He is also on the spectrum), they are insulting Temple Grandin, they are insulting Ari Neeman, they are insulting us.

I have a mental image of an event like that seen on X-Men- The Last Stand (In the movie, a cure is found for mutant gene, and there are a revolution). The image is like that, with the difference that the event is a cure for ASD.

That organization is insulting us. I am encouraged to check all I'm going to buy, for an Autism Speaks' logo. If I see that, I will NEVER buy that item. The presence of the logo means the product manufacturing company is helping them (donating part of the proceeds). Autism Speaks is a satanic brothel, NOT a "charity". They are spreading messages that are suggestive on the thought autistic people is lower than neurotypical, and cannot succeed in nothing. The messages are also suggestive on the thought that we should not exist, and our existence is bad. Autism Speaks SHOULD ALWAYS be boycotted. They SHOULD NOT gain anything, because they are EVIL, and they deserves POVERTY. That will be a JUST PUNISHMENT FROM HEAVEN.

The Autism Speaks name is an obscene phrase, that deserves to be bleeped out like obscene vocabulary on TV. Any depiction of Autism Speaks thing, deserves to be covered with a black bar, pixelate, or blur out, like genitalia, and obscene gestures and depictions.


anonymous 3 years ago

Autism speaks is so selfish the Governor of Pennsylvania supports and sadly that's our governor I hope you hate him as much as I do and dubya thinks that 0 plus 0 is

Infinity


anonymous 3 years ago

Ok so obviously there is issues with autism speaks but asking to take a side in the way it is worded is wrong too. Autism is not a choice but can be difficult for kids and adults with the condition and difficult for the parents who try to do their best to understand and help their kids with any difficulties albeit speech difficulties, sensory issues and just understanding the way this crazy world works. I never want my sons personality to change as his autism is such a big part of who he is. He is only 5 and every day im learning how his autism can effect his way of thinking and behaves. We have good days and not so good days. For anyone with aspergers and autism that is totally happy and content with their life-great im really pleased for you. But its not like that for everyone living with the condition. Soz just a mums opinion who loves her son more than anybody in the world (:


anonymous 3 years ago

Autism is a disorder, not a disease. The two are used interchangeably, but they are very different. A disease is deadly and has(or may not have) a cure, a disorder is a part of life and may have a treatment. Autistic kids, the really severe cases, do not need someone trying to force them to be "normal". It won't work, and only breeds hatred for the disorder.

Those of you who believe in euthanasia, come back when you have a low functioning autistic child, and if you still believe in killing them, I'll get the swastika ready.


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    Think of the Children Parents! Those poor, pathetic Parents!

    anonymous 3 years ago

    I've got autism - and I do NOT have a problem with Autism Speaks. Autistic people don't have some sort of immunity to the increased toxins, or whatever all it is in our environment that's weakening people in general and causing an increase in severity of all sorts of disabilities. Think of the poor autistic children - they aren't functioning highly (A LOT of them!) and they are NOT getting to have friends (A LOT of them!) and they are being neglected at every turn including by their parents who've been burnt to the ground by all the promises of hope they get and work they put into getting a little help so they are not alone - only to have it all be lies and more effort on their part than the worth of the services and so were TRICKED into harming their child by NEGLECT. Really people, what do you think drives a parent to do a murder suicide ??? Back to the toxins, autistic population of children are harmed by it more severely than neurotypical population - duh! And like blindness - autism IS a disability! Without blindness, a blind person is suddenly sight dependent just like everyone else, but hey pretty nice to have eyesight isn't it ??? Without my autism, my brain wouldn't be forced to do the gymnastics it does to function - and I suppose get to live life more on heuristics or something; but it's pretty nice to function without having your brain need to do gymnastics isn't it ??? (I think I somewhat know by comparing it to what's easy for me vs. the stuff others find to be so easy and then I get to feel so stupid because I know it ought to be easy but is sure is NOT!!! I'll bet it'd be a blessing to suddenly be a neurotypical similar to a blind person gaining sight. There have been experiments that have shown autistic brains to be trained to temporarily function like a neurotypical! But, it may have only been working on one particular feature of autism, and may not have worked globally. If social outcry would DEMAND that services NOT be withheld from autistic children and adults (I'm talking basic stuff, not handouts - the stuff anyone is entitled to, regular free public services anyone is entitled to) then parents would NOT be doing murder suicides and parents would NOT be contemplating aborting (murdering) unborn babies. DUH!


    anonymous 3 years ago

    I am supportive of any organization that will work on prenatal autism screening!


    anonymous 3 years ago

    Autism is a burden on everyone in a 100ft radius. Do something wrong and they start yelling, kicking and screaming. They cost 1 million dollars in their lifetime. Per person.

    Also this comment will likely be removed since autists love to circlejerk.


    KatyaKandy 3 years ago

    I can't take a side. My son is autistic and autism speaks helps with doing research. it also helps other parents get involved. My friend's husband and 2 children are autistic and he donates to autism speaks. In my area people are not upset about this they are very thankful. Yes, autism children and adults have a mind of their own. But there are so many different kinds of autism. there is also nonverbal so a parent needs to help speak for them.


    anonymous 3 years ago

    I'm not just against Autistic Speaks, I am against all of this stupidity. I read comments from people on this post that claim to have Autism. Many of you don't consider yourself to be normal, this is B******* people!!! YOU are normal! Why do we have to be diagnosed with anything? I am so glad that I was not diagnosed with anything. Looking back to my childhood, with current Autism awareness crap I would have been diagnosed as Autistic. At the age of 23 I could not write a single sentence correctly. I didn't have a diagnosis of Autism to blame for my failures. Do you know what I did? I worked my A** off!!! Parents want their child to be diagnosed with Autism because they are lazy, bad parents! I am sick and tired of listening to parents, and grandparent claim that their child or grandchild is autistic. It has become popular fashion, like it isn't cool to not have a child that is Autistic. Yes, there are people with real problems with Autism that need help, and instead all of the money is going to families that have children that are "in the spectrum of". If your child is in the spectrum of, the parenting part doesn't change. Every child needs appropriate nurturing to develop and grow. My extremely lazy brother-in-law uses Autism as an excuse for his children. The parents of both of my nephews leave their children to entertain themselves all day, with little to zero interaction. My poor nephews both have diagnosis of Autism, and their anti-social behavior is considered proof. One of my nephews looks like a malnourished Ethiopian. The parents excuse? "Because of his Autism, he is oppositional, and he won't eat foods like normal children" I have another brother-in-law that is dyslexic, and his mother has him convinced that he has a learning disability. He has become a lazy 35 year old bum that sits around at home, dreaming about becoming a comic book artist (even though he is a crap artist), and refusing to get a job. The parents that invent problems for their children are pathetic! You are lazy! You all make me sick! People that have been diagnosed with Autism, believe in yourselves, please! If you feel you can't get a relationship because of a condition, stop! I was never diagnosed with a problem, yet I suffered for 10 years! I worked hard, I learnt to be comfortable in my own shin, I increased my intellectual ability by working harder, I hit the gym hard to sculpt a better appearance, and I performed on stage in amateur theater to learn how to capture the attention of others. I stopped making excuses and worked hard for success. My biggest concern about this Autism awareness crap is that school teachers may attempt to diagnose my own child with a problem, because school teachers are lazy and want to blame the children in their class for the fact that they are poor at teaching to a variety of children. What is the point of diagnosing children with being in the spectrum of Autism? The answer is simple, after these children have spent their whole lives hating themselves for having this condition, they will likely suffer with depression and then spend the rest of their lives on antidepressants. The drug companies win! Think about it, why would any business put money into research without financial return? This is not how business works. Pharmaceuticals make more money by presenting an argument and creating a need for more money to be spent. Pharmaceutical companies have used funds to market a need for drugs, and it is them that have educated all of us into their way of thinking. There is no market in proving no action is needed, so basically all we have is the argument for Autism awareness with no argument against their findings. I read a report showing that a child diagnosed with being in the spectrum of Autism create costs to the government (taxpayer) of $2.3 million dollars for lifetime treatment!!! All these companies have to do is ruin your child's life to get their greedy hands on that money. Wake up people!!! If your child was really suffering with REAL Autism, you will know there is a problem without anyone having to diagnose anything. Over 1 million children in the USA have been diagnosed. With this the government cannot continue with the loss in this money pit and funding will be pulled. So if you are a lazy parent that wants to pointlessly diagnose your child with a problem, please prepare an apology statement to the parents of children with real autism because they will no longer get the help they need for their children!!!


    anonymous 4 years ago

    I am not against autistics, but i have a deep inbound hatred for the ones i refer to as "moaning corpses".

    All of this is because i developed this hatred when using a service that supported autism speaks, which led me to have this undenyable hatred.

    In my opinion, if you can't open a can, with a can opener, within 1 day at age 20, you don't deserve to live.

    (not counting those unable to move limbs)


    anonymous 4 years ago

    i am a high fuctioning auti., nvr spoke much but knew all the words. once i put my mind to school after being bullied, it was the best thing ever. i am highly intelligent and value education and self teaching. but am now the parent of twin girls, one who is moderately affected who has the mono tone anti-social stereotypical behavior, and one who is mildly affected, some anti-social, but otherwise great in school. my thing is that if autism speaks never done those commercials i would have never know my daughter was autistic, i just thought she was just extremely shy. so yes there is some cases who are textbook examples such as my daughter... i am kinda glad they gave me the resources to get her to see the doctors she needed in order for her dianosis to happen. i never thought in a million years we would be diagnosed as we are but am forever thankful there are people out there doing there research...i don't care for a cure cuz it wont do nothing now but hopefully those commericals keep airing so people are made more aware of their children...and for those of you getting overwhelmed i suggest take time out for yourself, have some you time, have your kid stay at a trusted friend's house or be creative and have fun with them while having their friends over, it makes all the difference...i know my daughter will never be able to live on her own but im in it for the long haul...and whoever said euthanasia should go help people with autism before making that statement, they are people too...


    anonymous 4 years ago

    For these unfortunate creatures, at least the ones with severe autism - Euthanasia. That is all I am saying.


    anonymous 4 years ago

    I have Autism. I wish that it can be cured. I hate it. It is a horrible burden. I have problems developing healthy relationships. It is hindered me from getting promoted at work. I HATE AUTISM! It is a horrible burden. It is not a just a different neuro profile. IT IS A DISEASE! Yes, I wish they can find the autism gene. Being autistic for 29 years really sucks. The only man I can find to have a relationship with me is 27 years older than me. I couldn't find people my own age who would date me ever. I walked on my toes throughout my childhood and was made fun of. Yes, I was made fun of on a daily basis.


    anonymous 4 years ago

    on the other hand, parents with low functioning autistic kids(the ones that suffer from mental retardation OR harm to themselves and others) need professional help or therapy. The kids need to be understood, not forced to act "normal". from the video, the parents were dragging their kids around, giving them no respect or regards. I think that the parents need to be a positive influence to their kids. The parents have a responsibility to raise the child in the way that best suits him/her. All of the kids had an intelligent look in their eyes, or is it just me? The parents need to stop re-enacting their own childhood and upbringing and focus on what needs to be done now. My main message to the parents of autistic children is to stop treating them like retarded lowlife homosapiens and stop using stereotypes to judge a person's future behaviors. You don't need a charity to do your job as a parental figure, just trained profesionals who know what they're doing and your own sense of right and wrong.

    from experience and observation

    I hope that sounded intelligent as I am in middle school.


    anonymous 4 years ago

    Im Autistic, since my childhood i worked hard to be like normal peapole. What i mean is that i can normally communicate with the society. Its very important to me, i want to have a normal life i won' t be good in a domain but i can't have friends. Because if it happen like that i will feel like a fck robot. I have very mutch talent on informatic and vehicule mecanic. Til now i haven't got a real friend. Im 16 year old


    anonymous 4 years ago

    The controversy arises from the fact that high functioning autistic people or aspie people, who oppose autism speaks are highly intelligent and don't appreciate being regarded as unable to advocate for themselves or being regarded as a "project" or "case" or burden for others. However low functioning autistic people can be much more impaired and need an advocacy group and it is only natural that it would be made up of the parents and caregivers. I have high functioning autistic children and I never have told anyone about their alleged diagnoses (the "spectrum" aspect makes any "diagnostic definition" very relative and subjective) unless they were being unfairly treated. I never wanted them to think they were less capable or less normal, but it is an always doubtful and 2nd-guessing proposition for a parent, how do I know it did not hurt them to be faced with relatively normal expectations? Struggles through adolescence, particularly, were/are monumental. But for most part it is up to my kids to decide how they want to address the subject. Even my "normal" kids have shadow syndromes (as do my husband and myself) of the more affected siblings, the spectrum is so graduated, how do you decide where it crosses the line from quirk into autism? What I have tended to see is seen is no happy medium: a more classically autistic child suffers from the low expectations that are held for him, while an aspergers child suffers from the high expectations that are held for him.


    anonymous 4 years ago

    Person-first language is a cute word trick, but I can use rhetorical devices too, and they would be far less deceitful.

    I vote for identity-always language! For self-respect first language! I say I am Autistic!

    I spit upon assimilation first language which insists that we must all eithger be NTs or retards. That is inflammatory, and is just a new form of racism for thugs to exploit.

    I am not a person 'with' autism just like a Chinese man isn't a man with Chineseness. It's crass, banal and is the belief of people who would prefer we are all perfect, soulless husks.


    anonymous 4 years ago

    Oh and also the puzzle piece thing is absolutely ridiculous for someone to be offended by. Again, nobody called autistic people a puzzle by making the puzzle piece a symbol for autism. It means AUTISM is a puzzle nobody has quite figured out. Again, dumbass.


    anonymous 4 years ago

    Don't be f***ing stupid. Autism sucks. Like Ness "Kage" Prower says, there is an overwhelming need for ways to manage autism, including funding for poor people to send their children to therapy and including research to figure out if it's possible to eliminate autism. And don't you DARE tell me that "therapy is just a way for parents to continue

    denying their children the freedom to be who they are" and "trying to fix them is insulting". THOSE kinds of statements are insulting to the struggles people with autism and those their related to and are around have to deal with twenty-four hours a day. If you knew anything about autism, you would KNOW that it SUCKS, and without good guidance and therapy you're often JAILED in your body and mind aren't free in the FIRST place to really be yourself and show the world who you are. Einstein is a HORRIBLE way to think of autism, and it shows a complete ignorance to what really goes on with the disorder. Sure, people with autism and asperger's occasionally say they wouldn't change who they were (some say they WOULD though)-- but they don't mean that given a chance they would make their lives easier! Autism is not "who" they are, it's something really crappy they have to handle.

    I also think it's stupid that I have to choose one of two answers to "side" with. No, autism speaks is not evil, and yes people with autism are people. In fact that was one of my major points, autism is never "who" someone is and it's unfair as fuck to treat them as such and speak of them as such. How ironically inhumane.

    Effing dumbass.

    I have asperger's by the way.


    anonymous 4 years ago

    I admit that I question the actions of the organization Autism Speaks. They do some nice things like the walks, the PSAs of the statistics, support of movies about autism like the Temple Grandin movie and the group of kids that put on a musical. I do think the science and research bit is a fraud. All of the money they spend on research and it all blames the mom or dad in some pathetic way. So,yes, I do think Autism Speaks is wrong. But they are doing some good things at the same time. And the puzzel piece? What is wrong with that? We are all puzzels. Some of us just of different shaped pieces that are hard to find or see to understand. I don't support Autism Speaks, but I am not completely aganst them either. I do like the Golden Hat Foundation thought and support it 100%.


    anonymous 4 years ago

    The lack of person-first language and a general ignorance regarding true evidence-based research surrounding the causes of autism within this forum are frustrating to say the least. Do more research, and learn how to speak about others, children or individuals with autism should have a voice and a name. No one should be labeled by a diagnosis, no matter what the condition. Regardless of how you feel about an organization, practice better person-first language.


    anonymous 4 years ago

    I am just learning about my sons diagnosis of autism and i have been researching it and you know what I think, I think the doctor is wrong but I am still weary of it and I would love to participate in a chairity and gather more information about this "autism" and I will not pick a side


    anonymous 4 years ago

    I don't like this website because now my entire projest is in danger of this. thanks.....


    anonymous 4 years ago

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    Take action now: http://proyectadoparasuestilodevida.webs.com/


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      Think Autism Speaks has Changed? - Think again - New Video, "I Am Autism", is More of the Same!

      Earlier this year, Autism Speaks asked for several family-submitted clips of autistic individuals and their families for a video designed to "shine a spotlight" on Autism.

      ... And then here's what they did with the clips.

      Would YOU want yourself or your children associated with this kind of propaganda? Would you have submitted clips to these people if you knew they were going to do THIS with them?

      Read about Temple Grandin!

      Thinking in Pictures, Expanded Edition: My Life with Autism
      Thinking in Pictures, Expanded Edition: My Life with Autism

      As an individual with Autism (and an inspiration on several levels), Temple Grandin's story is a must read!

       

      Five Things Autism Speaks Must Do Before I'll Support Them - (Like that'll ever happen.)

      1. Stop referring to Autism as a "horrible burden". Okay, we get it, you're mostly made up of pissed-off parents. Stop giving 'em what they want to hear and start telling them "Okay, so your kids are Autistic. Are you going to help them become all they can be regardless of whatever difficulties they have, or are you going to sit here and whine about it?"
      2. Drop the 'Cure or Nothing' Attitude. Among Autistics, there is a special name for this -- a curebie -- that is basically a slur against folk who think that you can magically "remove" the Autism and find a healthy, normal person underneath. It doesn't work that way. The autism spectrum is a behavorial and sensory amalgamation of traits and quirks, and to remove those and replace them with "Non-Autistic" traits and quirks just isn't going to happen. And even if it could, it would basically be brainwashing on the most horrific scale you could think of.
      3. Recognize that Autistics who are articulate, verbal, and intelligent need help too. Autism Speaks defines a very narrow band of autism; namely, the one where a child seems to have been replaced by a "little demon" who can't speak, can't function, and is doomed to life sweeping floors for a living. Yes, there is a name for the smart, savvy kind of Autistic; it's called Asperger's Syndrome. That doesn't mean they have it any easier, and it certainly doesn't mean they're the 'cured' kind of Autistic.
      4. Start supporting Autistics that need the funding. In today's health care crisis, Autism is not funded by any major insurance companies. All treatments at this point are untested, unfounded, and costing hundreds of thousands of dollars to provide one-on-one learning, personal assistants, equipment that can stand up to abuse, not to mention whatever various medications these parents are testing out. If the money Autism Speaks spent on research and dissecting dead brain tissue -- to try to find a neonatal test they could apply in order to "filter out" Autistic fetuses -- were spent cushioning the costs of all these treatments and expenses, families would be a whole lot better off for it.
      5. Quit threatening lawsuits against everyone who so much uses the name "Autism Speaks" to criticize you! Okay, really now: threatening legal action against Autistic people who you KNOW aren't as socially (let alone legally) savvy enough to stand up to you otherwise? What's up with that? The only other group I know of that reacts even close to the same way when their name is brought up is the Church of Scientology. Now who wants to be associated with a money-grubbing, closely-guarded organization who refuses to listen to Psychiatrists and allows Autistics to rot on the vine without any treatment? ... Wait, which group was I talking about again?

      The Dan Marino Foundation - A Charity that gets it Right!

      The Dan Marino Foundation focuses on adult services, recognizing that chidren with Autism grow up to become adults with Autism, and as such donations go to treatment options, helping Autistic individuals seek employment, self-sufficiency, and enriching their lives!

      ... which, y'know, is what people living with Autism actually need, instead of endless fundraisers for "awareness" and long-term research.

      Still, if you're looking for a good Autism-based charity that's a solid alternative to Autism Speaks, the Dan Marino Foundation is a solid choice!

      Think Vaccines Cause Autism?

      Think Again! MMR Doctor fudges results to fake link between vaccines and autism!

      Outraged?

      Sign the

      Autism Speaks: Don't Speak for Us

      Petition!

      Books on Autism from Amazon!

      (Note -- I'm not always sure which books on Autism are the best to provide. if you think any of the books listed below are offensive to Autistics, speak up so I can replace them with a more worthy book!)

      Has this lens opened your eyes? Is there something more I could add to it? Let me know!

      (no login necessary)

      More by this Author


      Sound Off! 32 comments

      Sheryl Westleigh profile image

      Sheryl Westleigh 8 years ago from Maine

      Thank you. My mom is a special education teacher with several autistic students and she keeps telling me how tired she is of parents who think their kid is broken. 5 stars!


      The Homeopath profile image

      The Homeopath 8 years ago

      I've never really investigated Austism Speaks before. I'm so tired of these pseudo-sham, money grubbing, worthless, so-called "charities". And I guess this is another example along the lines of the Susan G. Komen foundation and Locks of Love - just places to make wealthy "supporters" get more positive P.R. Thank you for enlightening me. It makes me sick that big business charities like this receive so much money to pad their directors pockets, while smaller, well-deserving ones go without because they don't have big money starting them off.


      anonymous 8 years ago

      Autism Speaks is a complete sham. It exists to exert control over the media and rob funds from well-meaning groups who may actually help autistic people.

      The fact that Autism Speaks is just a bunch of thieves is the one thing Neurodiversity and sane people can agree on.


      anonymous 8 years ago

      Spread the link to this podcast everywhere you can, folks:

      "Special Feature Interview with Douglas Giesel and An Update Interview with Lewis Schofield"

      can be found at www.mic.mypodcast.com

      At the end of it, a 13 year old boy with Asperger's Syndrome explains why it is Autism Speaks is NOT an organization to be supported.


      religions7 profile image

      religions7 8 years ago

      Thanks for giving autism a voice :)


      religions7 profile image

      religions7 8 years ago

      Great way to introduce the topic. I used to teach in a school for special education - there were kids with autism there too.

      You might like these lenses:

      Books about Autism

      Sensory Processing (aka Sensory Integration) explained: with tips on how to help your child.

      Information about sensory processing and tips for parents.


      VarietyWriter2 profile image

      VarietyWriter2 7 years ago

      Thanks for the info. Would love for you to review our Autism-101 lense at Autism 101


      teamlane profile image

      teamlane 7 years ago

      Blessed by a SquidAngel today!

      www.squidoo.com/squid-angel

      ~ Colleen :o)


      anonymous 7 years ago

      JigsawForte:

      Actually you are incorrect in your assumtions of my child. It is i8n fact the sensory issues that goes along with his autism that causes him to react violently when touched, especially when he is already upset. I am NOT echoing your point...you in fact are echoing MINE. You are absolutely correct. NOt all autistic people are the same not do they have the same feelings. Not every autistic person agrees with you. There actually ARE other autistic people who WANT a cure. It's the same as in the deaf community. Some people do not want to be cured from their deafness because that is all they have ever known so they reject the trasnplants but there are other deaf people who DO want to be cured of it. Just because it is something YOu don't want doesn't mean you have the right to speak on EVERY autistic person's behalf. Just as I don't have that right. I DO hope they find a cure for autism. For the people who have it and want it.


      rachelkeslensky profile image

      rachelkeslensky 7 years ago Author

      [in reply to Angela] If you'd like to continue this discussion, I would appreciate you at least keeping it in the same section of the page so other readers can follow along.

      If you are truly dedicated to stating your opinion, you are more than welcome to make your own Squidoo account and start your own lens and I will be more than happy to link to your page from mine as an appropriate counterpoint and resource for other parents and caretakers of Autistic children.


      Commandrix profile image

      Commandrix 7 years ago from Benson, IL

      Hi, good Lens...I haven't visited Autism-speaks for years because it was all about the people who live with people with autism and how crummy their lives were, without ever once mentioning how the actual autistics felt. At least, it was last time I visited. Besides, I don't really think you can wave a magic wand and "cure" somebody with autism. If somebody actually develops a "cure," I'm sure it will be a highly complex, highly expensive, and probably even a highly risky one.


      anonymous 6 years ago

      I pray to God That someone will give me a "decent job". I'm a hard worker and a a very professionally minded person. But, the waves my Autistic / Asperger personages gives off are immediatelly interpreted as not what a business wants.........................

      I don't know much about Autism Speaks. But, If they really do actually believe that those of us in the Autistic Spectrum aren't capable of thinking or speaking for ourselves. They'd really hate me!!. I'm one of those talkative, friendly, social butterfly types of Aspies. Who wants nothing more than to engage another in a deep conversation on a myriad of subjects. Like History, Politics, Literature, Animation, Manga/Comics, Spiritualism, etc., etc..............


      nenierhea profile image

      nenierhea 6 years ago

      For me there is no such term "Cure" in autism. I think they prefer "treatment" for that just like what Dr. Kurt Woeller's said. So if you want to know the different kinds of Autism Treatment, just visit his sites. There's no harm in visiting his site. In fact, you will get lots of information in the world of Autism.


      MargoPArrowsmith profile image

      MargoPArrowsmith 6 years ago

      Nice lens interesting argument. I heard about this first from an autistic client of mine. I suggested that she write a lens, but it just wasn't for her.


      EuroSquid LM profile image

      EuroSquid LM 6 years ago

      Interesting lens, very informative. I have given it an Angels blessing.


      tandemonimom lm profile image

      tandemonimom lm 5 years ago

      I didn't realize there was a controversy around Autism Speaks. Very interesting. ** BLESSED ** and featured on Blessed by Tandemonimom!


      Commandrix profile image

      Commandrix 5 years ago from Benson, IL

      You might want to take a look at your Plexos; there seems to be some non-autism-related links in there. Otherwise, good Lens.


      nuestraherencia profile image

      nuestraherencia 5 years ago

      Thanks for writing this. Every time an autistic speaks out, it helps ALL autistic children...much more than the "poor me" syndrome, let's get free this and free that which many parents who support Autism Speaks want...In their search to make people feel compassion for THEM, they are truly harming their children by making other people believe that having autism is the worse thing that can happen to any human being...sigh...Sorry, my pet peeve. I am so thankful that my son is awesome & autistic and the people whom I credit are the people from wrongplanet, not Autism Speaks.


      mysticmama lm profile image

      mysticmama lm 5 years ago

      AQutism Speaks must be stopped! They are horrible & treat people with Autism like they are monsters rather than people ~ Please people do not give Autism Speaks any money or support, there are much better Autism organizations out there.


      SIALicenceUK 5 years ago

      Great lens very informative. Thumbs Up


      DominicWoodfield profile image

      DominicWoodfield 5 years ago

      nice lens :) i wrote this article the other day about the difficulties of diagnosing autism: have a look if you're interested!

      http://www.squidoo.com/doctors-and-diagnosing-auti...


      anonymous 5 years ago

      Mark Rothmyr, the president of Autism Speaks makes $390,000.00 per year. Peter Bell makes $260,000.00, Geri Dawson Makes $456,000.00, Tom Hetzel makes $183,000.00, Patrick Kemp makes $227,000.00. The list goes on!!! Have you ever looked these people up online?? Look up their names! These are a bunch of bandits and thieves in the night preying on the hopes and dreams of others to finance their lavish lifestyle. Go to page 63 & 64 of this link: http://www.autismspeaks.org/sites/default/files/do...


      Einar A profile image

      Einar A 4 years ago

      Thank you for this article. It's not a "disease" or even a "disorder," it's a way of being, and those who want to "cure" it would have everyone be the same. What a boring world that would be!


      bryonetter 4 years ago

      Nice lens - please pleasze please like my and comment and i will return the favor.

      http://www.squidoo.com/jarir-nakouzi-and-autism


      Gypzeerose profile image

      Gypzeerose 4 years ago

      Interesting lens, I will research further below I make any decisions.


      ahmedaisar 4 years ago

      Another Important Lens! Very Informative Keep it uP!

      http://www.squidoo.com/helpingachildwithautism


      anonymous 4 years ago

      from our experience with a son with autism, some of the agencies there that are supposed to be helpful and supportive are the most devient and corrupt you'll ever find.


      anonymous 4 years ago

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      Spiderlily321 profile image

      Spiderlily321 4 years ago

      Wow great information here! Thank you for sharing


      Shorebirdie profile image

      Shorebirdie 4 years ago from San Diego, CA

      Very interesting page, not just on Autism Speaks, but autism in general. I really liked reading the comments by people are are autistic. It's nice that know that many of them accept who they are.


      CristianStan 3 years ago

      I'm not sure who to believe at this moment. But the ideas you presented against it seem plausible

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