Sunday, December 22, 2013

To Whom It May Concern: Open Letter to Sponsors of Autism Speaks

To Whom it May Concern,

I am contacting you today to express my concern over your continued support to an organization that actively hurts me, my son, and my autistic friends. 

I know by now you are fully aware of the efforts to bring attention to the harm caused by Autism Speaks to autistic people and their families. You have been notified by many autistic people, parents of autistic children and professionals who work with autistic people of how damaging this charity is,but still give support to an organization that the very people it is suppose to help actively condemn. 

Ask yourself this :Why would autistic people be so against an autism charity?

To begin, the language Autism speaks uses to represent us is dehumanizing at best. We have been called lost, kidnapped, missing, diseased, sick, ill, and epidemics. We have been blamed for divorces, suicide/homicide attempts, and making other people (parents mostly) miserable. If you replaced the word autism in the messages Autism Speaks sends out with your choice of gender, sexual orientation, race, or creed, it would be considered hate speech and/or discrimination. 

To date, Autism Speaks has no autistic people in leadership roles. Autistic people have tried to work with Autism Speaks and have brought the lack of inclusion of autistic people to their attention many many times. Our words are ignored, we have been given lip service and used a tokens instead of being involved in decision making. "Nothing about us without us' has been the long standing motto for the disability community, but somehow Autism speaks seems to think they are excluded from this.

More funding goes towards research for cause and cure than towards actually helping autistic people. Autism Speaks actively claims we are a growing epidemic, which is totally not true. If you understood the history of autism, you would understand that the criteria and diagnostic processes have changed dramatically over the years, so logically it is NOT a growing epidemic. We have just gotten better at recognizing and diagnosing it. Autistic people have always been around, we didn't just appear out of no where, some of us even breed and have autistic children of our own. (gasp!)

We (autistic people) need REAL CONCRETE help and support. Autism Speaks does not offer that to us. Autism Speaks actively promotes the need to eradicate us over actually supporting us. Their inflated statistics look good at a glance, but when you dig down further you find that only 4% of what they raise actually goes back into the community, and is often "help" that is very hard to access. 

We don't need a cure, what we need is support. We need to be involved in making the decisions about what supports work for us. We deserve not to have ourselves, our children and the ones we love talked about as some diseased epidemic that people are afraid of. We need acceptance, not "awareness". We need to be included in all efforts of advocacy for autism.

I understand that by supporting Autism Speaks you believe you are helping autistic people and their families. I would like to believe that you think you are doing a good thing, but I want to make you aware that what you are supporting is damaging to a community of people and not real help.There are organizations out there that are ran by or actively include autistic people that you could be supporting, instead of supporting Autism Speaks.

I am hoping you will reconsider and cease your support to Autism Speaks and consider one of the organizations listed above or another local organization. By doing so you will directly help autistic people, as you had intended with your sponsorship of Autism Speaks. 

Thank you 
Image Description: Blue and Green square divided diagonally and framed in green. Text Reads: "When Autistic people consistently tell you that something is wrong with an autism org. LISTEN” Sharon da Vanport

Saturday, December 21, 2013

Autism Speaks: Where Millions of Dollars Turns Into Thousands

By now you are probably aware of the boycott on Autism Speaks. We've been telling you a lot about the funding issues, the fear mongering and the lies.

I've done a great deal of reading and some research about funding issues as it pertains to Autism Speaks. Something clicked in my brain while I was doing this:

"What have they done for my state?"

That prompted me to do a little digging. I had to know, because once something like that gets into my head, I just can't get it out until I know the answer. So, I started doing a tad bit of research specific to my state and what I discovered were some pretty staggering lies,via their website and email communication with them.

The Autism Speaks website claims to have donated 62 million dollars to my area. I was actually pretty shocked at this number because we have no AS chapters here and we also do not participate in walks. 

So, I decided to use that nifty contact us option and ask some questions. I was doubtful about getting a response back, but I felt I had to try. I'm glad I did, because they did reply back.

I received two emails from AS, and within those emails I found out exactly how much funding was awarded to my state and for what. There is a huge discrepancy between what AS claims on it's website and the actual amount given. It's not even close to ONE million.

The truth is that under $40,000.00 in funds has been given to my state since 2008

Now,I'm not a math genius, but I don't even need to use a calculator to know that is a far cry from 62 million. 

This was what was found on their website

Click HERE for larger image 

The following is the email I sent:(note this is the only email I sent)

Click HERE for larger image

This is the reply I got from the AS contact person: 

Click HERE for larger image

Notice all the shameless plugs for the tool kits, walks and their response team (all of which are not concrete help for the autism community). 

Also, notice how she seems to be doing damage control because she probably knew I was onto something. 

Another thing I would like to point out is she did not mention research towards cause and cure in this message, I suppose that is the etc

Autism Speaks mission statement clearly states funding does go towards research for cause and cure.

Upon reading the first email from Autism Speaks I was doubtful they would actually get back with me as they had promised. but once again they surprised me. 

Here is the breakdown of funding she sent me.

What a shame they have to lie, but what else is new about them? Someone get them a bucket of water to sit in. 

 For more information on shady financials and website reporting for other states check out:

Autism Speaks Under Pressure, Doles Out Grants

Why I'm Against Autism Speaks

Why am I anti Autism Speaks? 
You are probably thinking  ”Isn’t all the exposure they give to autism a GOOD thing?” Well no.. not the way they do it and not for the reasons they do it.
I often hear from many people that any awareness is good awareness, I’m sorry but that is WRONG. Autism Speaks does not promote awareness, acceptance or even better lives for people living on the autism spectrum. They promote pity and fear of autism so you will donate money to their organization. Autism Speaks refers to autism as a crisis and epidemic. They constantly and consistently talk about autistic people being burdens and diseases. 
Autism Speaks talks about how autistic people cause broken homes, divorces and how autism families are not living.They claim people with autism are lost. They promote obliteration and extinction of a type of people with their research for a “cure”. 
They refuse to listen to and include the voices of autistic people. 
If you don’t believe any of what I have said, read the following article and don’t just stop at the article, read the comments that go along with it.

They often use inflated stats to scare parents into joining in on their fundraisers; fundraisers where only 3 to 4 cents on every dollar earned actually goes towards helping the community in the form of grants which are not as accessible as the organization makes it out to be.  The rest of the money they collect through fundraising and donations is used to pay cushy salaries and research for cause and cure. 
Autism Speaks does not speak or even care for your child, my child, myself or my autistic friends. Autism Speaks wants to eradicate us. Autism speaks wants to use our situations to line their pockets and they want to do it without the voices of the people they claim to want to help. 
Myself, my son and all autistic people DESERVE better representation. Autism Speaks should NOT have the monopoly on speaking out on what autistic people need… we damn well know what we need, let us speak for our self.
Nothing About Us Without Us!

Autism and the Holidays

The holidays are hard for autistic people (the time between mid Nov and Jan). It’s hard sometimes for the neurotypical population to understand this. 

With the holidays comes a lot of change, disruption, noise, bright lights, more social demands and let’s not forget all the energy that is put off (good and bad). Autistic people are extremely sensitive to these things. So, you may notice some changes in the autistic person you care for around this time of the year.

It’s common for parents to see this as a regression. Trust me, this is not a “regression”. This is a natural and common response to environmental factors that attack us. We feel out of control, we have anxiety, etc…

Adults have the option to retreat and gain some control over these things, while minors (children) have limited control over nearly every aspect of their lives.

Some may even lack the ability to communicate what exactly is wrong with them, either because they have obvious communication barriers or they just have no clue what all is bothering them (happens to adults too).

It can be frustrating to watch someone you love struggle with this, it can even seem “baffling” to you that they respond certain ways. Remember, no matter how hard it is on you.. it’s harder on the autistic person you care for. Any outburst, reaction, withdrawal, etc... is a communication that is saying “Please help me, this is all too much”

Keep that in mind as we continue through this holiday season.
Please and thank you.

Autism Speaks and Damage Control

It seems that after much backlash from the autistic community, its allies and organizations that support them, Autism Speaks is doing a little damage control.

They have started a “new” series on their website called “In Our Own words, Living On The Spectrum”.
The events leading up to this effort makes it extremely suspicious and leaves one wondering what the motive behind it may be,
Let me explain.
Autism Speaks has long been rejected by the autistic community for it’s refusal to listen to and include autistic voices in their efforts to advocate for autism. To date, Autism Speaks has not had one autistic board member or autistic person in any decision making role for their “charity”. While they have had a few “token” autistic people write for them, make videos for them or even employed a few, they have yet to have an autistic person to assume any role that would allow for autistic people to be properly represented by them.
They have further been condemned by the autistic community due to their mission to research for a cure and their consistent use of language that includes words like disease, epidemic, crisis, burden, lost, kidnapped to represent what it’s like to be or have an autistic child.
Furthermore, Autism Speaks only puts 4% of the funds they raise back into the community for family services in the form of grants that are hard to access. 
The timeline that leads up to what I feel is purely damage control on Autism Speaks part is as follows:
November 11,2013
Suzanne Wright, co-founder of Autism Speaks, Op’d an opinion article titled  Autism Speaks to Washington- A Call To Action.. In this opinion piece,Ms. Wright continued to use the same fear mongering rhetoric that Autism Speaks has been chided for again and again.
This one opinion article sparked off a chain of events that Autism Speaks should not have ignored. But, they did
Autism speaks received 100’s upon 100’s of responses to this OP on their website from autistic advocates, their allies and organizations that support them.
You can read those comments for yourself because they are still there.
Autism Speaks did not respond.
November 12,2013
The Autistic Self Advocacy Network (ASAN) released THIS STATEMENT in response to Suzanne Wright’s OP.
Autism Speak did not respond.
November 13, 2013
The Autism Women’s Network (AWN) released THIS STATEMENT
John Elder Robison,an autistic self advocate, resigned his roles at Autism Speaks, you can read his own words as to why HERE
Autism Speaks did not respond.
November 14, 2013
The Autism Society of American (ASA) released THIS STATEMENT in response to Autism Speaks.
Laura Shumaker, long time supporter of Autism Speaks who has had many of her writings published on their blog expressed her disappointment in the organization HERE.
Autism Speaks did not respond.
November 16,2013
The Arc published an OPEN LETTER to Suzanne Wright expressing their disapproval.
Autism Speaks did not respond.
November 18,2013
Cynthia Kim, autistic self advocate, organized a Flash Blog rightly named “This is Autism" in response to Ms. Wright’s repeated use of the line "This is Autism" in her OP. The flash blog went on for one day and received 245 submissions from autistic adults, children and parents to autistic children. These posts were tweeted, posted on facebook, posted Autism Speaks Facebook page, reblogged and spread all over the internet.
Autism Speaks did not respond.
At no time did Autism Speaks publicly acknowledge or speak on this mass outrage it caused within the autistic community. Not even once..
December 4, 2013
Autism Speaks starts a new initiative ‘In our own Words, Living On the spectrum”, and the first post was “I’m Here For You”  written by Kerry Magro, autistic adult and Social Media coordinator for Autism Speaks (will explain that role in a minute).
Autism Speaks states “This post starts a new initiative on our site called “In Our Own Words: Living on the Spectrum” which highlights the experiences of individuals with autism.”
You are probably thinking it is fantastic that they have an autistic individual working for them right? Well no,not really. It APPEARS to be a GOOD thing. It LOOKS good. But, it seems this is more for damage control.
So, this is the response Autism Speaks wants to send out to all the negative feedback they have been receiving. It seems they are using Kerry just like they used JER as their token autistic person. You know, someone they can push up to the front lines and say “Hey, look we do INCLUDE autistic voices!”
Ha! No, not really Autism Speaks, we know what the title Social Media Coordinator means.. Kerry wrote about it on his Linked In account:
"To assist in the daily management of various online communities that Autism Speaks is involved with, primarily focusing on driving conversation and engaging the “community.” In addition, establish a priority for creating and maintaining AS’ social media presence through Facebook, Twitter, and other social media methods and outlets in order to help cultivate and build a base of supporters"
We are very aware that this still means you have not ONE autistic person that holds a decision making position in your organization.
This is damage control
This is obvious.