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Speaking Acceptance or Just Saying Uncle?

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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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Grown Up Autism

*EDITED~ Watch the AWARD CEREMONIES HERE!

SO Proud to BE Nominated! Take a bow everybody!!

SO Proud to BE Nominated! Take a bow everybody!!

Grown Up Autism…

That’s exactly where we are headed as a culture, shifting away from an outdated Autism ’thought bubble’ that people have been stuck in. The bubble that does not see Autism as it is. A bubble of thought that does not value Autistic children or adults enough… to honor their powerful Autistic points of view. A bubble that  does not even identify Autistic people as equals. A bubble we seek to burst!  This narrow view that has heretofore hindered the grown up Autistic vision we believe, perceive and offer the world.

A vision which includes a world full of “physical and emotional equality supports” for Autistic people at all ages and stages.

Our big beautiful picture of equanimity.

On the highway to the 7th Annual ANCA World Autism Festival this ‘thought bubble divide’ strikes me now more than ever, as the true cause of the Autism divide. A divide prevalent between most professionals together with some parents of Autistic people and the Autistic people themselves actively co-creating and advocating in the community for their own unalienable rights.

The "thought bubble DIVIDE"

The “thought bubble DIVIDE”

 

“Great Autism Divide.”

Equality for Autistic people is unequivocal. It is or it isn’t, you either get that…or you don’t. The schism of people that have juvenile ideas about Autism equality and how to interact with and perceive Autistic people VS the people that have very adult ideas about Autism equality and how to interact with and perceive Autistic people…

 

 

As I board the plane from LAX to the 2016 ANCA World Autism Festival in Vancouver this concept circles and hovers over my brain as if my mind is the airport runway control tower…

 

 

 

AutismHWY UNITED with ANCA Naturally Autistic

AutismHWY UNITED with ANCA Naturally Autistic

United Minds, HeARTS and Souls

After five years away, landing in ANCA territory felt like a warm welcoming home. The 2011 INAP Award’s Event we attended, meant the world to us. Connecting with young and old that respect Autism on joyful adult levels was the most refreshing thing felt then and again, in the  NOW! Every delegate and participant from 81 to 4 yrs. old traveling to Vancouver for ANCA’s festival is energetically changed forever. The full board of acceptance and understanding brings abundance to the table everyday of this gathering. It’s a visceral and sensual bounty of goodness for Autistic people, their families and the industry seeking to support them ALL. A naturally rich community brimming with the knowledge that we all have something wonderful to contribute with or without the competiton. Having that direct experience of connection to Autistic culture opens hearts, minds and arms toward the myriads of difference life gifts to us ALL. A natural unspoken knowledge of alignment exists within the participants of the ANCA World Autism Festival . Unleashing a co creative flow which is vibrant, successful  and unstoppable.

 

Co creating Autistic equality globally…

 

Uniting people that want to follow Autistic advice is a very powerful connection. People and companies that seek to employee Autistic people into the infrastructure of their organizations and events is what we seek. It is what levels the so called ” playing field.” It’s what has already been created in many instances. COMPLETELY in the instance of Naturally Autistic ANCA;

Autistic People creating a worldwide EVENT which becomes a platform for Autistic People to emerge from while launching careers and connection to culture!

 

This IS the future for Autistic people and most importantly the world. Respecting that there are differing ways of EQUALLY experiencing the world and that Autistic people are creating a world more naturally inclusive of the entire human experience. Experiences that many people in society have honestly glossed over and denied. Experiences Autistic people demand. Beautiful natural experiences vibrating in every moment of the ANCA World Autism Festival.

Every innovative and loving person can be involved in creating best practice for Autistic people by respecting Autistic people as EQUALS in this human experience regardless, of our systemic differentials. Creating new and innovative ways which make sense to and for Autistic comfort and success! That is what the ANCA World Autism Festival is really all about.

 

GROWN UP AUTISM…

 

Ayberk Aksu and Jenny Story

Ayberk Aksu and Jenny Story

 

Joshua Cochrane accepts his award and speaks of profound PEACE!

Joshua Cochrane accepts his award and speaks of profound PEACE!

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Beau Brians and beautiful mandolins setting an accepting tone....

Beau Brians and beautiful mandolins setting an accepting tone….

 

Carissa Paccerelli SCORES an award ARTFULLY!

Carissa Paccerelli SCORES an award ARTFULLY!

 

Italian Artist Lisa Perini eloquently accepting her award with brother Alessandro's translating support.

Italian Artist Lisa Perini eloquently accepting her award with brother Alessandro’s translating support.

 

Phoebe Murer and MORE acceptance!

Phoebe Murer and MORE acceptance!

 

CANADA sweeps the SPORTS EXCELLENCE Category!! Kieran Stark's acceptance rocked!!

CANADA sweeps the SPORTS EXCELLENCE Category!! Kieran Stark’s acceptance rocked!!

 

Michael Savage's stellar acceptance!

Michael Savage’s stellar acceptance!

 

Tom Des Brisay awarded for the long-haul. Superb Marathon champion!

Tom Des Brisay awarded for the long-haul. Superb Marathon champion!

 

Vocalist Vell Baria overcome with emotion.

Vocalist Vell Baria overcome with emotion.

 

Jenny Story...

Jenny Story…

 

Olivia Cantu...

Olivia Cantu…

 

Joely Comer...

Joely Comer…

 

Leonora Gregory Collura speaking on the importance of cultural connection with Consulate General of Turkey!

Leonora Gregory Collura speaking on the importance of cultural connection with Consulate General of Turkey!

 

An amazing emerging culture!!

An amazing emerging culture!!

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Wise children/Joyous adults= Grown-up Autism

Wise children/Joyous adults= Grown-up Autism

 

So PROUD to be INCLUDED!

So PROUD to be INCLUDED!

 

"We must control our message. We must be the powerhouse behind our community as it expands." ~Leonora Gregory-Collura

“We must control our message. We must be the powerhouse behind our community as it expands.” ~Leonora Gregory-Collura

 

The MAIN element.

The MAIN element.

 

Grown up Autism personified in wise, joyous Autistic souls. ALL ages and ALL stages...

Grown up Autism personified in wise, joyous Autistic souls. ALL ages and ALL stages…

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PEACE

Today is International Peace Day! At AutismHWY we are truly all about Peace and Respect. Without understanding and respect for Autistic people of all ages at all stages we believe there will be a “peace delay.”

The sooner we can all respect Autism as a diverse way of being in life, the better. A way of being that requires new innovative human strategies for success! Ways to place us ALL on the peace train together!! Of course our PEACE…always involves pieces of CHALK and free expression! Love, Peace & Chalk to you ALL from the HWY!

peace day
IMG_0627There is a profound PEACE that comes with being exactly who you are!0418151831IMG_0981What an amazing figure!!

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The Autism Secret Sauce

secretsauce That special blend…

that works for YOU and/or your Autistic loved one. That’s the Autism Secret Sauce. The secret is within each Autistic person. Understanding a person’s Autistic framework and building upon that throughout a lifetime is the HWY to success. For everyone. Making snap assumptions about what an Autistic child/adult thinks, feels and needs in life is not awesome sauce. Creating that specially blended life plan “scaffold” for someone MUST include that ‘someone.’ NO ifs, ands or buts. It’s non-negotiable. Their input should always be the main ingredient in the sauce. If a person is non speaking that is no excuse to exclude them. There are always many things to discern and include from people using alternate means of communication which are integral to the recipe. As in: do not make the sauce without them!

 

It’s NO SECRET…

that incessant quick judgments are made about every age and every stage of Autism and Autistic people. Especially those using speaking alternatives as communication. People like my son are labeled as severe, profound and maladapted, all words we reject. These judgments have been running rampantly amongst people and most tragically the presiding experts for decades. Years upon years of programs built upon inaccurate Autism belief systems have many of us treading water that is not deep enough to support healthy vessels. I am regularly informed by experts that my non-speaking Autistic teen has the mind of a 2 yr. old. They also believe he is intellectually impaired. I have learned to ignore this ridiculous belief that these “presumptive specialists” hold about my now 17 yr. old son. Sadly, it’s these damaging and commonly seen expert beliefs, that families buy into and quickly add to their “sauce.” Don’t use flawed recipes in life.

 

Trusting what others say…

about your Autistic loved one over what they “say” OR “communicate” to you is a mistake. A very big one. It’s a betrayal. Imagine yourself in the position of wanting to voice your thoughts and ideals only to be talked to as if you are a toddler. Imagine feeling as if everyone is “managing you” without you. You are watching a “play” of your own life and you do not have any lines. It’s not a nice thing to consider. Possibly why…no one ever seems to! Handing over your instinctual common sense to so-called “Autism experts” is what I deem the ’slippery slope sauce.’ The sauce that is more like quicksand…where things can go sour and have you sinking quickly! You must realize that your loved one’s instinctual knowing is supreme and where all of the power lies. Do not second guess what you already know. No matter who is asking you to. Presuming competence shapes healthy attitudes and lives across the board. For your Autistic loved one /client, in the dynamics of the family and beyond. Families would be wise to take this power stance!

 

As a culture we are moving away…

from being told how to think and feel. In 2016 we see physical manifestations of just how unhealthy that has been. Autistic people do not respond to those tactics, genetically. We find that beautifully refreshing and a in all actuality; a much more natural human way of being. When you communicate to a non speaking person that you believe the people speaking around them, more than you believe in them: it’s painful. Just imagine for a moment what you would do and how betrayed you would feel in that instance. Just because someone uses words, they are believed and trusted to be correct about someone else’s non-speaking reality.  When others assume things and speak for someone else day in and day out…that is not okay. It only stands to reason that some days there will be hell to pay because of it. Days that have nothing to do with “hormones.”

 

 

Finding the secret sauce…

for yourselves and those you love takes time and dedicated contemplation. It also takes a keen and unbiased perspective. Watch how a person’s musculature changes when they are feeling uncomfortable, triggered emotionally and or threatened. Anticipate comforting tactics in these very real instances. Apply these FOUR basic tenants completely to your loved ones and be unwaivering in your use of them. When you approach every moment understanding how important these 4 key components are things will shift naturally.

 

#1.) Emotional Clearance. Clear your emotional slate and be emotionally open and fully available to support your loved one.

#2.) Verbal Validations. Use the words which show you unequivocally support your distressed loved one and the physical and/or emotional pain they are currently experiencing!

#3.) Physical Supports. Decipher what these physical supports are, a chill zone space, cool water, diet, bathing in Epsom salts, taking a walk, protein snacks, deep pressured massage or tapping, trampoline activities or swinging for joint compression.
 
#4.) Commitment of Respect. The resolve that you will be there for your loved one no matter what happens. Without shame or guilt you will respect what they feel, sense and experience. It’s just that simple!

 

For my son: Dietary changes, epsom and eucalyptus infused baths, loads of cool water and towels, foot, back and head massage with pressurized tapping, melatonin and horseradish infused foods (keeping congestion away) are currently in the mix for his comfort blend. He has actively taught me with out words his entire life what he prefers. My astute Autistic friends experiential words seem to validate and buttress every instinct Wyatt directs me to follow and for us….

It's IN the SAUCE!!

It’s IN the SAUCE!!

THAT…IS the AWESOME SAUCE!!

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