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Posts Tagged ‘autism speaks’

Maybe They Just Love Stigmatizing Autistic People: Autism Speaks Does It Again.


Have you heard it? The “Maybe” commercial that Autism Speaks and the Ad Council are promoting over radio airwaves in these final days of 2017?

We have and it is as obnoxious and misleading as any of their other “Autism Awareness” actions taken over the course of the organization’s existence.



The script for this radio ad goes something like this…


Maybe he isn’t a happy baby.

Maybe he is just being a boy.

Maybe he is teething.

Maybe he is just going through a phase.

Maybe he has… Autism.

No big smiles by 6 mos. of age IS a sign of Autism. Go to Autism Speaks for more info blabla blabla



time to listen

After a decade of #ActuallyAutistic people boycotting and speaking out against Autism Speaks using this type of stigmatizing assumption about Autism, against Autistic people, it seems they just cannot follow their own it’s time to listen “tag-line” of advice. Even after being systematically boycotted and shamed into placing the long asked for Autistic representation into it’s governing board of directors and removing cure from their mission statement, they just cannot help themselves. It’s nearly 2018 and they still insist on using harmful stigma to drive people to their website in fear of the newborn non smiley Autistic neurology. (?)
wy devil

Babies do indeed have a unique non speaking communicative style which informs discomfort most readily. Sensory needs are a very easy thing to read when you pay close attention at 3 a.m. or high noon. All babies need swaddling to feel safe and they indicate that need for physical comfort at every given moment. Don’t forget that in life we all want to feel safe and may need swaddling at any stage or age. Our human systems crave comfort and flow. When that isn’t happening smiles are not happening, it’s a very simple equation. Don’t believe this rhetoric which brands and reduces Autistic people as unhappy sufferers that do not smile. It is this kind of “Autism Awareness” deemed marketable for this “charity” that sets Autistic people back. Bad information countered as real advice to people unaware of what Autism actually is and how it may or may not present itself within each individual’s system. In 2017 we can call this type of rhetoric as #FakeNews.


More importantly something to absolutely frown upon. As 2018 fast approaches it looks as if we will still be telling Autism $peaks that they must DO BETTER for Autistic people… by listening to Autistic people. Send people to your website without telling them that Autistic babies do not smile. Uncomfortable babies do not smile. Be more discerning with the language and attitudes your “Awareness Ads” contain. This year society is receiving a wake up call concerning oppressed and marginalized people that will represent their own truths because, they wish to be interpreted correctly! Not portrayed yet again by the truths of non-Autistic people that are guessing and assuming how they -think -feel and -react to this life. This beautiful life we all share… uniquely!


To my great pleasure over the last 18 yrs. and through our chalk festival event I have met hundreds of Autistic people and their families on line and in real life. Never once have I heard a person describe or assert that they themselves or that their child did not smile in the first 6 months of glorious life.


Have you?







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Right Ways & Wrong Ways

wrong way
On the AutismHWY there are always road signs even if you are missing them at first. There are rights of ways…and many wrong way: do not enter signs. They are something that must be considered, understood and supported respectfully before safe travels for Autistic people can really occur. You would never just hop in and start driving a car when you don’t know how to operate the vehicle or the HWY, would you? We know this preeminently here on the “Autism Highway.” Rules of the road keep us safe, sound and alive. If you don’t know and/or go against these ‘rules of the road’ things can go horribly wrong, and do! This is a perfect example of how “right and wrong” not only matter but, are a matter of life and death!

Understanding Autism from the inside out, is not widely considered gold standard… when many thinking people know that it actually could, should and will be. Too far ahead of the Autism learning curve is a hard place to be for those of us holding these pragmatic ideals. We believe that accepting the knowledge Autistic people have concerning the internal mechanisms they experience, IS THE NEW gold standard for Autism.  Sadly, we live in a time where the majority of injustice revolves around people that cannot admit that they do indeed have things wrong.


Old systems that are not working, do die hard. Systems that were initialized before we had the wisdom of the Autistic experience to draw from, strive to maintain their old dominant message control.  People that have built their frameworks for Autism supports from a body of knowledge that is in fact flawed are now extremely confused about their foundation and it’s direction moving forward. As we quickly approach 2017 shouldn’t we be busy utilizing the many words of wisdom from Autistic people? Shouldn’t we all be excitedly updating our data and creating new programs that lead to many NEW OPPORTUNITIES by co creating…


The community needs a complete overhaul OR maybe ten million urgent updates reminding us we have to progress to Autism 10 ?!



The division in the Autism community as we see it is about respect. It’s not a fight over who is right and who is wrong. It’s about respect for the Autistic person and their unique systems, voices and needs. The differentials between Autistics is as vast as anything  else in life. Finding the comfortable approaches that work best for each person must be deciphered and accommodated in times of growth and regression throughout a lifetime. In the past society has relied on assumptions and the Neurotypical assessments of what “is presumed best” for Autistic people.  That model has caused much damage and continued bewilderment. It’s time for a completely fresh approach. An Autistic one.



When we came on line in 2010 we did not seek to “talk over” or for Autistic people. We were looking for amazing opportunities to merge with Autistic people.  We were seeking opportunities to learn from their astounding life perspectives and to partner with them as we speak truths on a global platform.  Thankfully, we indeed have, to our great benefit and JOY.


That is why it is so hard to see people like Bob and the late Suzanne “Wright”  co-founders of Autism Speaks using their power and celebrity influence to inform the world on the AutismHWY protocol without ever knowing the rules of the road or anything about the HWY’s drivers aside from their own young grandson. Organizations that demand they are doing the “right thing” before they even have a clue what that right thing is or even can be,  do a huge disservice. Like the multitudes of Mommy and Daddy bloggers who’s child was diagnosed yesterday and have now written guides for others from no knowledge whatsoever…?? People really need to research, relax and understand Autism before they tell others what to understand. It’s just that simple. The vast majority of Autistic people have been dismissed and ignored for decades…while others non Autistic people wildly narrate their lives incorrectly. There is so much wrong in that big picture!


If organizations, “experts” and others seek to truly empower Autistic people through respectful supports then they must take real steps to make that happen.  Working with Autistic adults to create understandings about best practice for Autistic children, by no longer talking over Autistic people as Autism authority. By planning conferences that FEATURE and COMPENSATE Autistic advice as gold standard and not as  last minute add-ons or exploited infantilized tokens.  Autistic people should be the centerpiece of the actual EVENT and respected as the vital citizens they are. Their knowledge can be used to transform the lives of everyone… once everyone is actively listening!! respect
Now that mainstream can gain inside knowledge from many Autistic minds we can build respectful supports that will work within the Autistic grid and mindset. Things will become easier for everyone when  the ideals and linguistics of Autistic people are recognized and processed correctly by NON Autistic people!  Forcing Autistic people to communicate and work in ways that are not in harmony with their internal mechanisms must stop. We can respect our differing ways of communicating and other sensitivity differences by working to build these innerstandings respectfully. We believe wholeheartedly in this better way to merge neurotypical and atypical society with the Autistic way. Egos aside. If you are on the right side of respect…you can’t go wrong!


respect 1

Much can be learned merging multitudes of mentalities foregoing ego while being accepting of extreme difference.

That life can be a beautiful equation of love plus respect that WILL generate an energetic flow of harmonic equality.

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Cover Us?

crusade againstAS peoplePart of the Why I #BoycottAutismSpeaks Flashblog.






Living in a constantly upgrading world, all families want to feel they are “covered.” Having all of our bases covered is what we are taught to do, on and off the fields of our lives. Covered by insurances, covered by the governments of our nations, the states and communities we live in, by the health and educational systems and hopefully by our families and friends. Our safety has become synonymous with being ”covered.” The healthcare system revolves around “covering us.” Police officers and soldiers ‘cover’ each other in the most dangerous situations. We have all hopefully had people help us cover a tab, or two! Artists cover other Artist’s work, books are designed to be judged by their covers as we adamantly deny doing that! An entire industry of politicians, celebrities and organizations seek media coverage for prosperity and power. So, with everyone seeking coverage and everyone else seeking to cover us, how can we trust all of this rampant coverage? What is good coverage and what is BAD COVERAGE?


In 2005 AUTISM SPEAKS decided on the latter. Bad coverage. Sure, in their minds they were doing something noble by covering people they saw as needing coverage. Yet, did they look beyond their new sliver of Autism IQ, their erroneous belief system formulated by parents and grandparents with no innerstandings of Autism? No. Did they consider the existing population of Autistic adults living and raising their own Autistic children in the world? No. Did they mindfully consider what kind of coverage should be given to Autistic people and their families for health and well being? No. They focused on the family members of Autistics that misunderstand and often despise Autism, choosing to live in varied states of confusion, pain and distress.  Autism Speaks chose to listen to people that prefer their loved one be as un-Autistic as possible. They did not consider AUTISM as a natural human condition or the people understanding, accepting and thriving on this incredible spectrum. They immediately disassociated themselves from Autistic people by demonizing Autism as an enemy to be crusaded against. They campaigned AGAINST AUTISTIC PEOPLE in endless media blizzards. If people were not “Aware” of Autism, they now became aware that it was all “wrong” according to the Wright’s. Autism Speaks claimed to speak for a population of people they had never met. Let alone, understood, respected and engaged with. How arrogant of them to decide that Autism needs to be “Spoken for” and ”Crusaded against.”


A 10 yr. media campaign exploiting the difficulties Autistic people and their families endure when not in alignment with Autism is NOT awareness or respectful, loving ‘coverage’.  It’s HATE and fear mongering. It’s misinformation spun negatively to the population, used to gain footholds and dollars. It’s using misinformation and power to decide what coverage others need and will get. I saw many people unhappy when the U.S. government was deciding how citizens would be covered through the new health-care/insurance system, this is no different! Allowing 41 states to COVER outdated harmful methods of ABA therapy is frightening to many Autistic people. Reforming insurance coverage for Autistic children without the wisdom of Autistic elders is negligent at best. Why would a company “speaking for” a population crying out for inclusion, willfully exclude them? Since we receive no answers we must assume it’s the same reason they crusade against Autism. Misunderstanding and- HATE.

This is why there is a movement boycotting Autism Speaks.


HATE and misunderstanding  is what Autistic people and their allies “Crusade against.”  We crusade against a company and it’s supporters unwilling to update their idea of COVERAGE. Unwilling to learn from the scores of Autistic voices speaking out loudly with amazing insights for us ALL. Unwilling to acknowledge that AUTISM is a life-long condition we must embrace, respect and innerstand. We crusade against non-Autistic voices that COVER Autistic voices. We ask that professionals work with Autistic adults not against them by covering us with (what we now know) are harmful therapies. Therapies created by non-Autistic people with compliance and indiscrimination from non-Autistic peers as primary goals. Therapies that have hurt an entire generation of Autistic people. Time to re-examine the coverage Autistic people can use, not what non-Autistic people think they need. Time to re-examine the therapies given to Autistic people without their advice. Time to stop deciding it is okay to speak for people that are already speaking. It is time to listen to the voice of our Autistic elders in every instance, to enhance the futures of our Autistic generations to come.


People Magazine it would have been nice if you had uncovered the truth about heroes among us in 2015.

Hear the truth that the Wright’s have been doing Autism wrong for 10 yrs. and counting…





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Progressive Connections

parrotsIn 2015 we are so connected.
Finally, we can chat with our out of state OR international family and friends being connected to whomever we desire just about whenever we desire. It’s awesome.


In the Community surrounding Autistic people this has been BEYOND awesome. It has been groundbreaking. Instead of merely sitting in the dark, wondering what other people are experiencing we can actually connect and share our unique and bright ideas that evolve from and revolve around AUTISM.
Autistic people being able to connect with other Autistic people? Beyond brilliant !! Non Autistic people and (parents of other Autistic people) allowed to hear the voices of Autistic people? Incredibly enlightening, useful, loving and entertaining!!


YET, many people willfully refuse to take advantage of these progressive, brilliant connections and remain in the dark. IF a non profit organization was formed 10 yrs. ago when we were not at all connected with Autistic people and the experiential enlightenment they share, why wouldn’t that “premiere” organization update it’s mission 10 yrs. later? Why wouldn’t it move forward with the times to reflect this new technological change in progressive connections we now enjoy?


 The Autistic voice we can NOW see, feel, hear and touch, just a mouse click away.


We can OVERLOAD our senses in the Autistic voice (ironically) if we desire to.


Yet this 10 yr. old company that formed expressly to SPEAK for Autistic people proclaiming to everyone else in the world that “it was time to listen,” continues to only hear the VOICE of the Non Autistic parents of Autistic people and their desires. Not the actual words and desires spoken of by Autistic people.  (Ironically evil.)


It’s a disgrace and a shame to the community.


Some of us had a glimmer of hope  upon hearing about this month’s change in management at Autism Speaks. A new CEO has been named this month as the founder steps down and the first quotes we see from the new regime reinforce the 10 yr. old outdated mission. “Autism Speaks will continue to drive a leadership agenda around the issues that matter most to parents.” Same bat time, same bat channel.
The agenda will remain non Autistic and parent driven. Parent’s that for the most part do not connect with Autistic adults in the world. Parents that continue to pathologize Autism and would like to see it disappear. People continuing to travel the AutismHWY in the dark. No understanding that Autism is part of humanity on a genetic level. No Autistic friends or consultants providing Autistic GPS. No new state of  the art experiential Autism information lighting the way.


Sadly and apparently NO progressive connections at AUTISM SPEAKS.


AutismHWY willfully chooses to drive forward connecting to Autistic people and listening to their progressive enlightened voices.  JOIN US, won’t YOU!



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