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Speaking Acceptance or Just Saying Uncle?

sticker IA
Today October, 14th 2016 Autism $peaks has announced that they have updated their organizations mission statement for the first time in their 10 years of existence. Correctly removing the word cure from it’s content and adding in the words acceptance and understanding. Examining the calculated language further you see, that there truly isn’t the change Autistic activists have been seeking.  You do not hear the language of heart and soul that speaks to Autistic people. You still hear the cold language of dehumanization and the “less than” mentality. People may say, “that they are making progress” and expect Autistic people that have been harmed by their 10 year media awareness and fundraising campaigns to agree. Well, they don’t agree and you can read about that DIRECTLY HERE.

 

People seem to credit Autism $peaks for bringing Autism to the forefront in media. I had heard of Autism and was well aware of it’s existence long before A$ came onto the scene. What Autism $peaks did was verbally bash and beat Autism up in the public domain through television, radio ads and even billboards. Giving Autism a kicked in gut and two black eyes then conveniently claiming to the world that they would take care of it all. Take care of it all with the millions of dollars they marketed, mined and removed from many of our local communities. For a decade executives have enjoyed their walk in the park “charity life” of fundraising with celebrities and shmoosing on television. Where was there any “understanding” or acceptance” for Autistic people? Where was there any real Autism understanding spread into society?

 

 

Our Mission

Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.

Autism Speaks enhances lives today and is accelerating a spectrum of solutions for tomorrow.

 

 

We hear the words, causes, solutions and BETTER interventions along with the word DISORDERED used twice to describe Autistic people. Heck, they couldn’t even use the phrase “Autistic people”. This from a statement that was said to be crafted over the better part of a year? Seriously, this is long thought out change?
This “change in mission” seems more in alignment with the quote from an A$ spokesman using the terminology that this change of mission is an “evolving strategic direction.” Everything A$ does is strategic. This much we know. Autism is big business to them. They seek to garner millions of dollars from the families they stoke with fear and misinformation. This has been their main strategy and with a new “mission” how will their fundraising change? Our guess is, it won’t.
A$
Autism $peaks refuses to admit the error of their ways by making a public apology for the harm they have caused to an entire culture of people. Their mission continues to be based soley on what uninformed parents and professionals seek. Which seems to be from all language and appearances, to free themselves from the complications of Autistic life. Continuing to call “early identification and action” intervention is itself harmful. We intervene when we see something “wrong” and then seek to modify that something. We must support Autistic people without the goal of intervening against them. Autistic people need supports to become the best version of themselves NOT interventions to become an idea of who they should be for the sake of others. Listen to the language and tell us again Autism $peaks has “CHANGED.”

 

After many years of BOYCOTTING and BLOG WRITINGS Autistic people and their allies have turned the Autism tide. Autistic people have built their own infrastructures without the 25 million dollars that The Wright’s used to create the instant A$ platform. Autistic people have year after year stood for their rights to be seen, heard, respected and honored. In big ways with little to no money, let alone a platform! I recall a very heated political discussion that went on with A$ board members Ed Asner and his son Matthew verses countless Autistic and ally activists. In that hours long conversation Ed Asner finally admitted that “Yes, perhaps it was time for 1 (Autistic person) to be on the A$ board of directors” beside him and all of the other non Autistic members. WoW, You think? I actually asked Mr. Asner if he would like to be part of a show titled “Lou Grant Speaks”…only he would not actually get that opportunity because, the only scripted lines went to Mary and Rhoda!? It was quite the marathon conversation.

 

Shortly thereafter it was announced that there would be not ONE but, TWO Autistic board members joining Autism Speaks; Valerie Paradiz and Stephen Mark Shore. Two people that were not speaking out against Autism Speaks. How’s that for strategic?! In 2011 when John Elder Robison was “strategically” appointed to an A$ science board, it was noted that he was not an actual seated board member. He also urged Autism Speaks to change their mission and the language they used in order to create funding and his advise was dismissed. He left the organization with a terse resignation letter referencing the brutal language of the late Suzanne Wright’s 2013 “Call to Action” op-ed.

 

This strategic evolutional direction of Autism Speaks is transparent to those of us that accept and understand Autism and there’s a certain continuity of irony in that. Autism Speaks HAD TO change their mission statement just like Donald Trump HAD TO deny he was a sexual predator. When a culture of people who’s humanity has been willfully damaged and stigmatized by others… begin speaking out, the ripple effects become waves. Waves of authentic consciousness that build with connection to each and every soul in that alignment. Having just returned from one of the most rich Autistic created and driven experiences ever ** The 2016 ANCA World Autism Festival ** this Autism $peaks ‘press release’  feels like more of the same old stale breadcrumbs they scatter to optimize their marketing.

 

Autism $peaks is in the business of raising money to make Autism easier for non Autistic people. Listen to their language: THE WAY THEY SPEAK. They are not speaking the language of understanding and acceptance… of heart and of what will work best for Autistic people and their intensely beautiful emerging culture. Writing the words into a mission statement that still sees Autistic people of all ages and stages as DISORDERED doesn’t help. The value in Autistic people has so much to do with their difference. Their unique abilities and gifts are natural and valid and in need of recognitions and supports, not solutions and interventions. Best practice for Autistic people will be created by other Autistic people in conjunction with people that understand this simplistic reality. A$ talks the talk and only walks the money walk. We won’t be able to trust them until they acknowledge what they have done and completely honor what we are saying …

GROUP PHOTO from the amazing 7th ANCA World Autism Festival Vancouver BC Canada

GROUP PHOTO from the amazing 7th ANCA World Autism Festival Vancouver BC Canada

Autistic people need to mentor and teach other younger Autistic people. Autistic people are equals and ready to co-create with humanity when you really are listening.

Not just SAYING that YOU DO.

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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!
yield

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 ?!

 

 

right-and-wrong-street-signs-isolated
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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