Crusading against hate! autis, speaks founders are NOT heros!

  hello,

         Recently People magazine featured bob and sussan 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 fighting to keep autistic advocates out of the discussion of autism

• 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!
• There is nothing heroic about painting parents and caregivers who murder autistics in their care as victims faced with a horrible burden and turning the murder victims into the villains!  There is nothing ok about demonizing the person who's life was taken from them and turning the killer into a matter in a cry for more help!

• their is nothing heroic about demonizing Autism and fighting against autistics that want acceptance, and understanding

• There is nothing heroic about promoting organizations known for severe violations of human rights like JRC

• 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!

white German Shepherd behind "boycott Autism Speaks" written in chalk

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

people magazine the very title og your article was steeped in ablism, in ignorance and clearly designed to creat fear, fear of autim, T

My mom recently passed and I miss her more then anything one of her biggest fears was that my disability would mean my life would be valued less, she feared what societies view of my value as a person, or more appropriately lack of value in the eyes of a society that sees me as nothing more then a burden, would permit others to do to me, what rights would be allowed to be stripped from me because I was seen as worth less and a burden due to my autism, and most of all she feared if politics went really messed up I would be on a list of burdens to cull from humanity due to my disability, and while that last sentences sounds pretty extreme and unlikely  the rest of her fears were valid. And they are valid because of how autism speaks spreads awareness, because of how you portrayed autism in your Article,

Painting autism as something to be feared, to be battled paints autistic as less, so often you hear parents of autistic kids fearing what will happen to their kids when they die, well how you speak of autism will effect the answer to that directly, The message you send to the world is about autism and autistic is how autistics will be viewed. 

If the message is that we are drains, burdens and that we destroy the marriages and live of our families then people we see us a such and they will view us as less then human.  And in the words of a friend of mine 

"Here is the problem with the fear rhetoric, it makes people afraid it dehumanizes those living with this disorder, it enables people to see them as less and that is very dangerous!!, extremely dangerous! When you view someone is less it is easier for people to do all sorts of awful things to them, use them as experiments, rape, kill or lock away in some institution where not even their basic needs are met left to sit in their fecal matter. If we present our children and loved ones as burdens then that's how they will be treated! No on will want to help them, they will be seen as drains and their value will be lost to others. And al the things I listed above will continue to happen as they do today! How can we expect society to help and stand up for our loved ones when we are telling them our children are nothing but a problem, a burden and saps on the economy! " (S,D)

No one with autism no matter how mild or severe is less than human because of their challenges, challenges don't take away from your humanity!

Everyday autistics around the world hear how they are burdens, drains, need fixing, our murders are excused, we are told everyday our lives are worth less and burdens to our non autistic loved ones, at the same time our voices are silenced by organization like autism speaks when we try to speak up and say we are here we matter, 

Bob and Susan wright are not heros their organization shuts out and fights to silence autistics and silence our voices, they spread stigma and fear and excuse murder that is not heroic!

if you want to feature real heros look at the Autistics and our families who are fighting for acceptances, understanding and supports that actually benifit autistic people.look at people fighting the stigma and demonetization 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! So if you want to highlight heros highlight Autistics, high the parents and allies in autism acceptance who support neurodiveristy and acceptance those are the real heros!!

, @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!

This is Autism

This is Autism

This blog post is part of the This Is Autism FlashBlog in response to Suzanne Wright, co-founder of Autism Speaks statements made in her national call to action plan.where she so kindly told us all autism is 

Pain

Misery

Suffering

Destroying families

A burden to our families

Now individuals and families are speaking out! We want our voices heard! So....

What is Autism?

If you go for a  technical definition autism is a neurodevelopmental disorder affecting communication, both verbal, and nonverbal communication i.e the ability to read and produce body language, social skills/interactions and sensory processing and is accompanied  by narrowed fixated interests, resistance to change and stereotyped behaviors that affects each person differently......... But what does that even mean?????? Well what it means for each person with autism is different. I am only one person with autism and here is what autism is for me.

Autism is seeing and experiencing the world differently from everyone else.

          Autism is a life lived through my senses. Not merely just using them as a passing way to observe my surroundings, made sense only by a plethora of words and verbal communication  but RATHER They ARE how I understand, communicate and navigate this world! Without needing words to do so.  Both for the good and the bad!!  They are the cause of frustration, pain, confusion and overload  but also of joys, wonder, amazement and understanding.

Autism is experiencing pure overwhelming joy and happiness from certain smells,textures sights, and sounds but great pain confusion and overload from others.

Autism is a world of focus and intense passion for one specific thing, my special interest.

Autism is reading about, writing about drawing and experiencing my special interest.

Growing up it was relating to animals before people.

Autism is years of intensive early interventions, speech, occupational, play therapy, ABA ect learning to be like everyone else and learning to do things everyone else can do

Autism is struggling to communicate even a fraction of everything going on inside my mind.

Autism is Where words and verbalizing are tiring and draining,

Autism is working so hard to gain verbal skills only to find that those very same skills take from other more important skills like processing Vision and cause slower ore skewed sensory processing.

Autism is being able to formulate complex thoughts and ideas, being able to quote movies and understand complex ideas and concepts but not be able to tell you where the keys are in the house even though I can see visually in my mind.

Autism is sitting at the dining room table at a friends, family or of your fiancé not saying a word wishing to and trying to find some way to participate in the conversation.

Autism is working twice as hard as everyone else to do the things they take for granted everyday

Autism is needing a schedule and routine In order to be certain you remember all the basic self care things

Autism is needing visual schedules and picture charts as an adult

Autism is running out of the public restroom covering your ears form the hand dryers

Autism is crying yourself to sleep

Autism is not having your facial or vocal expression match your emotions or intent

Autism is not being able to find the words you need and not being able to get them out.

Autism is discovering that You communicate much better through your ipad using AAC apps and for the first time you can actually get out more of what's going on inside your head then you could ever do before!

Autism is fighting off public meltdowns and shutdowns when overwhelmed an overloaded

Autism is watching your nieces, nephews, cousins and friends grow up and out grow you.

Autism is never reaching some milestones and finding different ways if reaching others

Autism is missing out on subtle cues and misinterpreting peoples reactions and body language

Autism is being both hypo and hyper sensitive  to your senses

Autism is intense strong emotions

Autism is tags being painful and sensitive to what clothes I wear

Autism is not knowing how to express or put words to those emotions

Autism is over stimulation an meltdowns

Autism is people constantly misinterpreting you

Autism is hating to see those you love or care about hurting or in pain but not knowing what to do or how to show you care.

Autism is becoming easily overwhelmed by things other people  can do easily

Autism is not being able to describe what hurts or how to a doctor

Autism is not being able to tell your love ones when something bad happens or someone hurts you

Autism is having sensory issues

Autism is having anxiety

Autism is having intense and heightened senses

Autism is having organizations like autism $peak$  claim to speak for you while ignoring what you and others on the spectrum have to say. Claim to speak for you then tell the world you are financial, physical and mental burden that will destroy your family and use you to make money while promoting fear.

Autism is needing to break even the most basic things down into smaller steps

Autism is suddenly laughing or making a random sound, movement or  saying something suddenly because you just processed something in your head that you are responding to

Autism is being overwhelmed by kids your age and not knowing how to interact with them

Autism is being overwhelmed in a crowd

Autism is  being overloaded when people are to wordy

Autism is struggling when there are to many verbal directions.

Autism is thinking visually

Autism is sleeping under a 20lb blanket because it helps you wake up less and sleep through the night and is super comfy!!!

Autism is wearing the same outfit you wore yesterday because it feels softer then the fresher cleaner ones.

Autism is watching the sidewalk sparkle in the sunlight as you walk.

Autism is looking at a brick wall, checkerboard pattern on repeated tile patterns and seeing changing shapes and designs  as you look at them

Autism is carrying around your favorite stuffed animal when your 14 and when your an adult

Autism is being 5  taking apart flashlight and pulling out the springs then putting it back together again.

Autism is dissecting flashlights and electronics into your adulthood

Autism is caring very deeply for friends and loved ones but forgetting to call or talk to them for long periods of time

Autism is getting so caught up in thought or in your own world you walk right into a street.

Autism is comfort in the repetitious and predictable.

Autism is 3 hour baths

Autism is being the child who never slept through the night and being the adult who still doesn't.

Autism is living in the moment

Autism is being detail oriented but being unable to organize or keep my room clean

Autism is watching the same movie over and over again

Autism is being a picky eater

Autism is randomly echoing the teacher in class

Autism is rocking, spinning, jumping had flapping to express emotions and to self regulate and regulate your senses.

Autism is stimming!!!

Autism is knowing your loved ones scent

Autism is curiosity

Autism is walking your own path

Autism is growing up with everyone trying to make you normal

Autism is trying so hard to please your parents and lived ones so you try to be normal and what you think they want even though it is exhausting and you get it all wrong anyways!

Autism is finally learning to accept yourself for who you are.

Autism is learning differently

Autism is loving your friends and family

Autism is never out growing your love of the swings, blowing bubbles in the park or going down the slide

Autism is imagination and creativity

Autism is loving water and swimming

Autism is being able to see and hear but needing a service dog to help guide you in crowds and alert you to specific sounds,

Autism is fighting to beat the odds

Autism is surpassing everyone's expectations

Autism is being fragile and resilient

Autism is determination

Autism is smelling, tasting, chewing and examining new objects

Autism is  seeing the traffic cone with the orange light on it and tasting the flavor of an orange lollipop In your mouth

Autism is finding a sing that you love and get a strong feeling from and playing it over and over again until it fades

Autism is just being happy sitting next to someone you love and not needing to say a thing to have a good time

Autism is exploring

Autism is getting so into something you loose track of time me and forget to eat

Autism is needing deep pressure

Autism is prescripting interactions and conversations

Autism is Ned exta supports and assistance

Autism is loving a full life and thriving through love, patience, acceptance, understanding and having the right supports

Autism is energy

Autism is sensations through your body when you see christmas lights

Autism is smelling christmas lights

Autism is good and bad

Autism is love

Autism is trusting

Autism is being different

Autism is being human

Autism is complex an complicated

Autism is individualized

Autism is living

Autism is so much more

Autism is a part of who I am

Autism is part of me

Somethings there are no words for so let these photos tell you the rest!

This is autism!
 

   -AutismDogGirl