WHY I BOYCOTT AUTISM SPEAKS

FEAR MONGERING

Imagine you or someone you care about is diagnosed with something. What would be the one thing you DO NOT want to happen?

The one thing nobody dealing with a diagnosis of any kind needs is fear.
Imagine after your diagnosis you look into it and you read things like this:
“This thing will cause you sleepless nights.”
“This thing will ruin your marriage.”
“This thing will bankrupt you.”
“This thing should scare you.”
“This thing will embarrass you.”
“This thing will hurt you and your family.”
“This thing will make you cry every day of your life.”
“This thing will rob you of your hopes and dreams.”

Who would not feel worried and scared after hearing things like that about their diagnosis?

Nobody needs to hear words like that when dealing with anything in life. And those are exactly the kinds of words Autism Speaks uses when talking about autism. Those are the kinds of words Autism Speaks uses in their commercial “I am autism.”
If you do not yet know the dark side of Autism Speaks you might not believe me. I understand. They appear so helpful and caring on the outside. Well, THIS is the original advertisement so feel free to watch it. It is rather disturbing but it might help understand why actually autistic people boycott Autism Speaks.

AUTISM SPEAKS USES FEAR TO MAKE MONEY

People who are scared will happily hand over their money to someone who promises to eradicate the cause of their fear. That’s why Autism Speaks promises to do just that.
Autism Speaks is researching to find ways to detect autism in unborn children so they can be killed before even being born. Of course they do not openly say it that way. They do say things like “Those families aren’t living.” though.

AUTISM SPEAKS BELIEVES AUTISM IS A DISEASE

To Autism Speaks autism is a disease that brings nothing but suffering to people affected with it and those people need to be saved.

However, autism is not a disease. Autism is a disability. I do not argue that point at all. But it needs acceptance and accommodation not eradication.

There are two sides to everything and so there are a lot of things about my autism that I deeply appreciate. I am thankful for my ability to see even the littlest things in life. My attention to detail is astounding. I am thankful for my ability to do things with all my heart and soul, with my entire being. If I do something I do it right. If I do something I do it until it is done. I am thankful that I will never get bored because I can entertain myself anywhere and with anything. My brain spews out thoughts and ideas without a break which makes me a very creative person. I am thankful for my absolute sense of justice, and right or wrong. I am glad that I detest lies and feel strongly about injustice in life. I have extremely strong morals and ethics and I will stand up for them no matter what. I am thankful for my sense of order. I am thankful for how intensely I feel everything. My senses work in all kinds of interesting ways. I sense the world and everything in it intensely and that often makes for very interesting experiences.

The most important point is that autistic peoples lives are worth just as much as those of non-autistic people. If you take autism away from a person you don’t only cure all the difficulties that person might be confronted with – you also take away an integral, essential part of their being. If you eradicate autism you eradicate the autistic person at the same time.

“NON PROFIT CHARITY” IS A GREY ZONE

On the surface Autism Speaks helps people. Because people who think they are getting help will happily hand over their money to Autism Speaks.
Because if an organization appears so caring, loving, and helpful in public nobody will question them. Nobody will question where the donation money actually ends up. Nobody will question if there are motives behind the publicly promoted ones.

WHERE DOES THE MONEY REALLY GO?

It might still be hard to believe after all that great publicity Autism Speaks generates for itself so THIS is Autism Speaks Audited Financial Statement for the year 2013

Here are some of the numbers:
43% for advertising and donated media – that’s over 52 million dollars
19% for salaries, benefits and payroll tax – that’s over 23 million dollars
13 % for science grants and awards – that’s over 15 million dollars
And
4% for family services, grants, and awards – that’s just over 4 million dollars

This is not a joke. Autism Speaks spends barely 4% of their budget on actually helping families. The majority of their money – well YOUR money really – goes towards advertising their idea of what autism is, paying their staff, and researching a cure for autism.

There has also been an incredible amount of money from fundraisers that pretty much ended up back in Autism Speaks hands through “related party transactions”.
That is when raised money is given to an organization or institution with leadership members on the Autism Speaks board. It simply means that Autism Speaks likes to donate the money they raised to themselves rather than using it to actually help autistic people and their families.

If you are a non-profit organization that aims to help autistic people and their families then the absolute majority of your funds should be spent on exactly that.
Autistic people and their families do need help. Lots of it. And money is a huge part in this. Therapy, special schools, and treatments are expensive and we all know how horrible the insurance system is.
But dangling “help” in front of people in order to get their money and then use that money for something completely different is not only wrong it is abusive.

AUTISM SPEAKS LIES AND ABUSES THEIR POWER

Autism Speaks claims that they speak for autistic people.
It is even in their name. Yet there is no single autistic person on Autism Speaks’ Board of Directors or in a leadership position.
The reason why is most likely that no autistic person who gains insight into Autism Speaks would ever take such a position. And any autistic person in such a position would eventually gain too much insight and would most likely speak up against what is going on behind closed doors.

THIS is an open letter from John Elder Robison, an actually autistic person who used to work for Autism Speaks on why he resigned.

Autism Speaks continuously tries to discredit autistic people who speak up against them.
Autism Speaks has even taken the words of an activist who spoke up against Autism Speaks and used them on their website out of context. They have abused their power as a well-known and highly supported non-profit organization to get away with this. Again this might be hard to believe so you can find a detailed account of that occurrence right HERE.

Autism Speaks also continuously refuses to communicate with actually autistic people. They refuse to apologize for things they have said. They refuse to correct statements they have made. They simple refuse to even acknowledge the existence of the actually autistic people who speak up against them.
Why? Because they can. They have money. They have the power of being highly respected and supported by people who either do not know what Autism Speaks really stands for or share Autism Speaks true agenda of trying to eradicate autism.

AUTISM SPEAKS DOES NOT SPEAK FOR AUTISTIC PEOPLE

Autism Speaks’ claim to speak for autistic people only works as long as the autistic people they claim to speak for do not have the capability to speak for themselves.
This is especially true for the countless autistic children who simply do not have the ability to comprehend and/or speak up for themselves (yet). It is also especially true for the nonverbal autistics who do not have any means of communicating in a manner that others can comprehend (yet).

Autism Speaks does not speak for me.
In fact nobody speaks for me. What autistic people who actually cannot speak for themselves need is somebody who tries their best to help them speak for themselves. Not somebody who just speaks for them without even knowing what they are trying to say.

AUTISM SPEAKS DOESN’T SPEAK FOR AUTISTIC PEOPLE.

AUTISM SPEAKS SPEAKS AGAINST AUTISM.

And with that they speak against all actually autistic people.
That is why I boycott Autism Speaks.

Thank you for reading. We can make a change.
Awareness. Acceptance. Inclusion.

This post was originally written as part of the #BoycottAutismSpeaks Flashblog on July 16th & 17th 2015 – You can find that blog HERE and read all the other articles on the subject.

Finally: Of course people should organize to help autistic people and their families. Of course people should donate to those organizations.
But instead of just donating to whatever organization one hears from, people need to inform themselves first. Research the charities you want to donate to before you donate.

These are some charities which are actually by and for autistic people:

Autistic Self-Advocacy Network (ASAN)
Autism Network International (ANI)
Autism Society of America