They are not Heros! a post to people magazine on Autism speaks

hello,

         Recently People magazine featured bob and susan wright as "heros among us"  They got a huge cover page and a story of coarse but here is the thing People if you had done a little research first on your subject matter you would have learned very quickly

Bobs and Susan wright are NOT heros!

• there is nothing heroic about dehumanizing Autistics!
• there is nothing heroic in spread fear and stigma for your personal gain!
• there is nothing heroic about make an entire group of people feel like burdens and curses to their family!
• there is nothing heroic about SHUT OUT the people you claim to speak for and silencing their voices!
• there is nothing Heroic of parading parents in front of a screen to cry and say how much their child has ruined their lives!
• their is nothing heroic about demonizing Autism and fighting against autistics that want acceptance, and understanding
• Bob and Susan wright are NOT HEROS!!! Autism speaks hurts ‪#‎actuallyAutistic‬ people! the little good they have done pales in comparrison to the pain suffering, tears and harm they have caused building barriers of fear between Autistics and the community! Period!

People magazine you may ot have realized this but by featuring them as heros and battling autism as a good thing you too have contributed to the steriotyping, dehumanizing, demonizing and spreading of hate and fear towards Autistics

if you want to feature real heros look at the Autistics and our families who are fighting for accetances, understanding and supports that actually benifit autistic people.look at people fighting the stigma and demonization of Autism because in a world the tells you we ar lost, broken and burdens the true heros are the ones who stand with us in love support and acceptances who lift up our voices, We are not broken, we are not lost we are here we matter and we deserve to be heard!

Whit German Shepherd standing next to large chalk writing that reads "boycott Autism Speaks!

"I am Autism Speaks" An Adaptation of "I am Autism""

Hello,

                A few Years ago Autism Speaks made a video that outraged the Autistic community called "am Autism" they got such a strong backlash they had to take it down, However the memory of it is still discussed in toe community today and you can still find videos of it on social media. a while ago I got to thinking about it before I realized this video was spt on with just about everything they were saying, However it did require a few Edits and they forgot to add "speaks" after they said Autism,  So Today to distract myself from Nim's loss I made those Edits for you please Enjoy. My hope Is maybe Autism Speaks if you read this you will understand this is not meant to be mean spirited but to get you to do some real inwards thinking and consider the messages about Autism you are giving to the public Even though many of you have good intentions the way you speak about Autism is harmful, Please do some inward reflection and consider the messages you are sending out, ask yourself "how would I feel if a large organization said these things about me?" and consider just WHO you are choosing to ignore and shut out The Autistic Self advocates, and our family and friends who do not see us as tragedies or burdens but as people who need to do things differently but are still valuable and who still have voices weather we speak, sign, type to communicate or don't yet have the ability to use AAC so we communicate through our behavior.  We live with Autism everyday, all we want is for you to hear us and to listen

"I Am Autism Speaks"

I am Autism Speaks
My hatred is visible to your children, but if I can help it, It is invisible to you until it’s too late.
I know where you live.
And guess what? I live there too.
I hover around all of you.
I know no color barrier, no religion, no morality, no currency.
I speak your language fluently.
And with every voice I take away, I acquire yet another language.
I work very quickly.
I work faster than pediatric aids, cancer, and diabetes combined
And if you’re happily married, I will make sure that your marriage fails.
Your money will fall into my hands, and I will bankrupt you for my own self-gain.
I don’t sleep, so I make sure you don’t either.
I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.
You have no cure for me.
Your Advocates don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that my propaganda isn't  harmful—of course, until it’s their child.
I am Autism Speaks, I have no interest in right or wrong. I derive great pleasure out of your loneliness.
I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?
And the truth is, I am still winning, and you are scared. And you should be.
I am Autism Speaks. You ignored me. That was a mistake.

And to Autism Speaks I say:

I am an Autistic self advocate, a father, a mother, a grandparent, a brother, a sister, a friend.
We will spend every waking hour trying to weaken you.
We don’t need sleep because we will not rest until you do.
Autistics and Family can be much stronger than Autism Speaks ever anticipated, and we will not be intimidated by you, nor will the love and strength of my community.

I am an Autistic Advocate riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message.

Autism Speaks, you forget who we are. You forget who you are dealing with. You forget the spirit of Autistics, and mothers, and daughters, and fathers and sons.
We are Qatar. We are the United Kingdom. We are the United States. We are China. We are Argentina. We are Russia. We are Ireland, We are the European Union. We are the United Nations.
We are coming together in all climates. We call on all faiths.

 We use picture Schedules, AAC technology, blogs, facebook, social media and Twitter, and a growing understanding to spread Acceptance you never anticipated.

We have had challenges, but we are the best when overcoming them. We speak the only language that matters: love and neurodergance and disability acceptance

Our capacity to love is greater than your capacity to overwhelm.
Autism Speaks is naive. You are alone. We are a community of warriors.

We have a voice.
You think because some of us cannot speak, we cannot be heard?

That is autism Speaks weakness.
You think that because you build a wall of fear and stigma, I am afraid to knock it down with my bare hands?
You have not properly been introduced to this community of parents and grandparents, of siblings and friends and schoolteachers and therapists and pediatricians and autistic self Advocate.
Autism Speaks, if you are not scared, you should be.

When you came for Autistics, you forgot: you came for me.
Autism Speaks, are you listening?

Thank you

        -NonSpeakingNotSilent

, @SesameWorkshop you cant combat stigma by teaming up with theorganization that spreads it!

Dear Sesame Street,

         This was one of the flash blogs I have been more passionate about. I was raised with Sesame Street! It is a beloved childhood memory for me, along side lamb chops!  Growing up as a very small child I was very sick. I ended up having open heart surgery at the age of 4! One of my favorite movie was big bird goes to the hospital. I would always watch it before I went and over and over again at home. This show acted as a social story for me and greatly helped ease a lot of my anxieties. I admit to humming or playing the main song from it to this day at times I have had to take my retired service dog  or my pup in training to the vet. Especially to emergency vets. So you see, your show still has a place in my life today! So I wanted to make sure I did this blog post right.  Before I wrote this blog I did a bit of research and red some of the things there bloggers had posted, then I decided to read through the comments section.of a post shared by the huffington post. It was heart breaking to say the least. There were people and parents commenting about how this boycott and the boycott of autism speaks is all "high functioning," autistics and not by "real severe autistics," or that their kids had severe autism and autism ruins lives ect. There were a lot of great replies by other autistics to such comments. But those comments to tell the truth still hurt I started to wonder if I should write this blog?  I started to think that maybe I didn't have a place to speak on this, because maybe I was to "high functioning," and people would see me as to high functioning and thus anything I had to say on this matter would be tossed aside as not having value because I wasn't severe enough. I decided that, eepven if that does happen I still need to write this blog and get it out. So here we are!

        Why am I mentioning this??? Because this is the exact type of message autism speaks sends out! They promote an us vs them mentality in the autism community. Autism speaks demonizes autism and use fear about autism to raise awareness an get their funds.  When autistics have spoken out to them on this they dismissed them as to high functioning. This is a form of shaming I call functioning shaming. They are saying if you do not like what we say about autism you are to high functioning and your voice doesn't matter. The truth is this boycott isn't just by those with high functions autism you will be hearing from many with moderate to severe forms of autism as well. Functioning shaming is very damaging and the truth is those who tell you we are all high functioning and thus don't have the right to speak on this matter don't know us, they don't know our lives our challenges or struggles. Please don't fall for the functioning shaming. The truth is functioning labels are even real diagnostic labels and have been proven to be unsound, and they are often based on of someone can't speak or not. However there are plenty of people on the spectrum who are verbal to highly verbal but can not care for themselves or live independently and there are those who are nonverbal that have decent self care skepills and may one day live on their own.  Don't dismiss the many and diverse voices of this community.

 As well as reading what others have written I watched the video with Abby the fairy where the autism speaks partnership was introduced. Susan wright talked about an initiative to combat the stigma of autism and to celebrate the amazing in all children. I admit I was in a bit of shock, because you see autism speaks is one of the biggest promoters of the stigma surrounding autistics!!!!

It really baffles me that they claim to want to address the stigma and promote acceptance of autism cause they are the biggest contributors from their autism every day video to their address to congress last fall.

  They tell you they want to help fight the stigma and promote understanding and acceptance of autism,so let's examine a piece of their work really quickly. Tell me if this sounds like promoting acceptance and understanding for autism and combating the stigma. in their address to congress in a call to action they stated

 "These families are not living.

They are existing. Breathing – yes.  Eating – yes. Sleeping- maybe.  Working- most definitely - 24/7.

This is autism.

Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future.  

This is autism.

On the good days my daughter Katie and all the other moms out there – 70-million around the world – see the sun shine. They notice the brilliant colors of the autumn leaves. On bad days, they are depleted. Mentally.  Physically.  And especially emotionally.

Maybe they have been up all night caring for their teenage child who’s having a seizure.

Maybe they are up yet again changing the sheets because there’s been another bed wetting accident.

Maybe their child has been trying to bite them or themselves.

Maybe they can’t afford the trip to a doctor specializing in autism.

Maybe there is a waiting-list for ABA, speech and OT. 

Maybe their insurance won’t pay.

Maybe they don’t have the money to pay a special lawyer to fight for school services.

This is autism."

Link: http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action

They went on further to say this;

""Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help.

This is a national emergency. We need a national autism plan – NOW."

They completely ignore the vast diversity of the spectrum and pain an image that everyone with autism is like this and that those who are like this basically aren't human. They don't celebrate their amazing they stigmatize and spread fear.

     How is this not promoting the stigma and demonizing those with autism? This isn't acceptance and fighting for acceptance this is pure unfiltered fear and dehumanization.  This isn't combating the stigma or showing the amazing at all!  It's just a lot of harm and stigmatizing. 

You see much the same message here I am Autism here and in Autism Everyday here.

Here is what autism speaks really says  the messages they have continually and my views on them.

Autism speaks tells you we are lost, locked away and unreachable 

   We are not we are here, we hear and understand everything you say even if we can not speak we understand you! We are right here listening waiting for you to reach out and meet us where we are at and to love us and accept us for who we are, not where you wish we were or who you wish we could be.

Autism speaks says we don't communicate: 

 we can speak or do speak we are ALWAYS communicating with you, it just isn't in ways you expect! It's ok to be anxeous it's diffrent I know but if you put aside everything you have been told  and all your preconceived notions of how things should be and really open your heart and your mind you can find away to reach us, but you have to be ready and willing to enter our world. 

Autism speaks tells you our lives are a tragedy,

   We are not tragedies we are people who live, yes we are disabled yes we have challanges but our lives matter we still have value the real tragedy is the fear and dehumanizations spread by organizations like autism speaks so they can get your money  

Autism speaks will tell you  we don't have a future,

      We do have futures and with the proper supports and services and with understanding and acceptance from the community we can have fulfilling and bright futures,  If we are taught to embrace our passions  and build our strengths then we are capable of anything we may dream! All we need is the right supports, services and acceptance 

Autism speaks tells you we are puzzles missing pieces

  But we are not, our lives and challenges  may be puzzling to you and navigating your world maybe puzzling to us, but we are whole and complete people! We aren't broken! Many autistics don't like the puzzle pieces because of the negative things autism speaks has attached to it, but the autism ribbon is multiple puzzle pieces and wasn't created by autism speaks, autism speaks has on single blue puzzle piece that reflects pretty well their one sided narrow view on autism.as well as the negative messages they spread. I how ever embrace the multiple puzzle pieces, they are bright and vibrant and uniques as each person on the spectrum, the variety of colors to me show there is a large and amazing spectrum of people living with autism, I also see them in a different way! Not that I or any other autistic is broken or missing pieces but rather that we are whole complete amazing beautiful individuals and it is the community that is missing pieces, these pieces are the proper supports, services acceptance and understanding, with those pieces we can become part of the community! However I do acknowledge and respect that some autistics do not see it this way and perfer to not use puzzle pieces and that ok too.

Autism speaks tells you they speak for and advocate for autistics 

The truth is they don't! Rather quite the opposite. They actively seek to silence autistics! From their very beginning autistics have spoken out to them, trying to explain to them why their adds hurt autistics and what they should change! They never listened! They shut out every one of them! A few years back a 14 year old girl made a parody  sight on them after they made their "I am autism," video that Basically demonized autism and was honestly really creepy! The site mirrored how autism speaks spoke about autistics only for NTs or non autistics they went after her, claimed she owed them a tone of money in lost donations then said they wouldn't make her pay if she signed over the rights to her website,! They BULLIED an AUTISTIC CHILD!!  To add to this autism speaks has never had a single autistic person on their boards of decision maker or in any meaningful positions in their organization. There is a stance in the Autism community Nothing about us with out us. Yet Autism speaks feels they can and should tell you all about us, without us and they have no problem trying to shut us up and silence our voices when we object to how they do it.  recently a bill has been up for re approval, the combatting autism act (think of this title for a minute) which was changed to the autism cares act (a much better title) there was a very big amendment to this bill that was purposes that autism speaks BLOCKED!! 

http://autisticadvocacy.org/wp-content/uploads/2014/06/SCHAKOWSKY_01_xml.pdf

For a clear explanation : http://autisticadvocacy.org/2014/06/asan-statement-on-autism-cares-act/

That's right they blocked an amendment that would require autistics to be involve in several of the  boards and such that are part of the autism cares act! It that isn't actively trying to silence autistics what is?

               Autism speaks doesn't speak for autistics, autism speaks hurts autistics!

We can't continue with this type of awareness! You can not combat the stigma by partnering with an organizations that spreads it to get donations.  

Sesame Street you have always been about inclusion and treating each other as equals. This is why I hope you will and I ask you to please, hear our voices and reconsider this partnership with autism speaks!  You will find and see a ton of people reaching out to you asking you to reconsider this partnership as well! autism speaks doesn't value equality or understanding. This is an organization that really hurts autistics! We as a community are excited you want to create an initiative to promote acceptance and combat the stigma so Please consider other organizations such as Arc, The autism self advocacy network or the autism women's network. These organizations do promote, acceptance and true understanding. They value the lives views and voice of autistics something autism speaks does not.you cant combat a stigma by joining forces with those who promote it!