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Can We Really Trust AUTISM SPEAKS?

Updated on April 2, 2012

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!)

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!

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    • profile image

      CristianStan 4 years ago

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

    • 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.

    • Spiderlily321 profile image

      Spiderlily321 5 years ago

      Wow great information here! Thank you for sharing

    • profile image

      anonymous 5 years ago

      CXY-I appreciate for your kind and generous sharing. Shop online at christian louboutin sale mall for a great selection of christian louboutin 2012, wedding shoes, evening christian louboutin ankle boots, boots and sandals for girls, women and men with free shopping on all orders.Welcome to luxury christian louboutin high boots online store.The best christian louboutin bags at best price, free delivery, easy returns & exchanges, 100% quality guarantee! Save 82% Off. Cheap christian louboutin evening makes a woman's feet dazzle and shine even after the twelve strikes of midnight. Own a pair of stylish and wonderful christian louboutin flats is women's lifetime pursuit. We offer christian louboutin pumps red bottom shoes online shopping by an elegant but easy way. Shopping online at discount price for red sole signature designer christian louboutin sandals, from christian louboutin sandals, christian louboutin pumps, christian louboutin wedges, christian louboutin slingback and christian louboutin boots.

    • profile image

      anonymous 5 years ago

      CXY-I appreciate for your kind and generous sharing. Shop online at christian louboutin sale mall for a great selection of christian louboutin 2012, wedding shoes, evening christian louboutin ankle boots, boots and sandals for girls, women and men with free shopping on all orders.Welcome to luxury christian louboutin high boots online store.The best christian louboutin bags at best price, free delivery, easy returns & exchanges, 100% quality guarantee! Save 82% Off. Cheap christian louboutin evening makes a woman's feet dazzle and shine even after the twelve strikes of midnight. Own a pair of stylish and wonderful christian louboutin flats is women's lifetime pursuit. We offer christian louboutin pumps red bottom shoes online shopping by an elegant but easy way. Shopping online at discount price for red sole signature designer christian louboutin sandals, from christian louboutin sandals, christian louboutin pumps, christian louboutin wedges, christian louboutin slingback and christian louboutin boots.

    • profile image

      anonymous 5 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.

    • profile image

      ahmedaisar 5 years ago

      Another Important Lens! Very Informative Keep it uP!

      http://www.squidoo.com/helpingachildwithautism

    • Gypzeerose profile image

      Rose Jones 5 years ago

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

    • profile image

      bryonetter 5 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

    • Einar A profile image

      Einar A 5 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!

    • profile image

      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...

    • DominicWoodfield profile image

      Dave Woodfield 6 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...

    • profile image

      SIALicenceUK 6 years ago

      Great lens very informative. Thumbs Up

    • mysticmama lm profile image

      Bambi Watson 6 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.

    • nuestraherencia profile image

      nuestraherencia 6 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.

    • Commandrix profile image

      Heidi 6 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.

    • tandemonimom lm profile image

      tandemonimom lm 6 years ago

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

    • EuroSquid LM profile image

      EuroSquid LM 6 years ago

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

    • MargoPArrowsmith profile image

      MargoPArrowsmith 7 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.

    • nenierhea profile image

      nenierhea 7 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.

    • profile image

      anonymous 7 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..............

    • Commandrix profile image

      Heidi 8 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.

    • rachelkeslensky profile image
      Author

      rachelkeslensky 8 years ago

      [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.

    • profile image

      anonymous 8 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.

    • teamlane profile image

      teamlane 8 years ago

      Blessed by a SquidAngel today!

      www.squidoo.com/squid-angel

      ~ Colleen :o)

    • VarietyWriter2 profile image

      VarietyWriter2 8 years ago

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

    • 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.

    • religions7 profile image

      religions7 9 years ago

      Thanks for giving autism a voice :)

    • profile image

      anonymous 9 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.

    • profile image

      anonymous 9 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.

    • The Homeopath profile image

      The Homeopath 9 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.

    • Sheryl Westleigh profile image

      Sheryl Westleigh 9 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!