Hi, I’m Amythest, and welcome to Ask an Autistic!
[intro music – I want to write a song, to shine a light, be the change we want, set
things right, we've been waiting in the dark for so long...]
Autism Speaks is one of the largest and most well-known of the autism organizations in
North America, and I think that they also are overseas in the UK under the name "Autistica". A lot
of autistic people, and some parents of autistic children, have a problem with Autism Speaks.
In fact, I’ve never met any autistic person who supports Autism Speaks, or thinks that
they are a good organization
There are some parents of autistic children who say that they like
Autism Speaks, and who will defend it in discussions about its shortcomings. But to give them the
benefit of the doubt, I feel like people who support Autism Speaks just don’t know how terrible
of an organization it actually is. So in this video I’m going to outline just a few of the many
reasons why Autism Speaks is awful, and actually hurts autistic people rather than helps them.
Firstly, for a “charitable organization,” Autism Speaks does a really bad job at being
a charity. In 2012
only 4% of their very expansive budget went towards helping actual autistic people
and their families. Four percent. These numbers are from Autism Speaks’ own non-profit tax
exemption form, which you can see online if you search for it. For example, in 2010, 44% of
their budget went to research, 21% went to awareness and advertising, 22% went to fundraising,
5% went to administrative costs and salaries, 4% went to “other,” and 4% went to family
services – that is, money going directly to autistic people and their families to help them.
Now wait! you say. Research, that sounds good, right?
Like we need to... find a cure?
Firstly, there are lots of autistic people and their loved ones who believe that autism
doesn’t need a cure.
Secondly, you can’t cure autism. Autism is a developmental disability and it’s
present since birth. What makes a person autistic is that their brain developed differently
-- developmental disability. You can’t take an autistic person and give them a cure and
make them non-autistic. Autistic is their neurotype, autistic is the way that their brain developed.
And this is a controversial subject, so I’ll just touch on it lightly, but the 44% of Autism Speaks’
budget that went to research –
that research is working towards things like finding a pre-natal test for autism,
and finding out the genetic marker or trait that causes autism. Now this isn’t research
that is going to help the lives of autistic children and adults who exist now, this is research
to find a pre- natal test for autism. Whatever your beliefs are, you know, those are your beliefs, and
that's why I’m just touching on this, but if you think that Autism Speaks’ research is going towards
helping actual autistic people and children who exist now, helping them to live their lives and
be healthier and happier autistic people, then you are sadly mistaken.
To illustrate my next point of why Autism Speaks is just awful, I’m going to borrow the words
of an autistic advocate, Codeman 38, who posted this on dailykos.com.
“Imagine, if you will, that an organization existed by the name of Womanhood Speaks, which, on the surface, appeared
to be in support of women’s rights. Now imagine that the governing body of this organization
only included members of the male gender, with not one female represented in its ranks.
that its actual aim was to create a registry of all females and force them to become more
masculine, completely disregarding the fact that a majority of females are perfectly content
with their womanhood, and even found it to be advantageous. Imagine that members of this leadership
appeared on popular TV programs, talking about the epidemic of womanhood and how it needed
to be eradicated.” In this example, Womanhood Speaks is Autism Speaks, and if we use this
example, it becomes how clear and terrible it is that,
never in the history of its existence has
Autism Speaks had an actual autistic person in any position of significance on their board, or running it,
you know,
there’s never been any really good autistic input because there are no autistic people present.
Now, there was one autistic person, who up until recently worked with Autism Speaks,
but really in a very superficial role. Really he was just “here, we have an autistic person working with us now!"
You know, one autistic person. Good try, Autism Speaks. But he actually resigned
– his name was John Elder Robinson, and he resigned November 13th, 2013, in an open letter online.
He said that he couldn’t defend Autism Speaks anymore because of the hateful messages that
they were putting out. Now, the straw that broke the proverbial camel’s back for John
Elder Robinson was ‘Autism Speaks to Washington: A Call to Action.'
In this article, written by Suzanne Wright,
autistic people are dehumanized, vilified, and made out to be burdens on
society. Autism is compared to an epidemic, and quite frankly the negativity is astounding.
And really, it woke up quite a few people, who previously had only seen the surface of Autism Speaks
and thought they were a good organization, and there was a bit of a snowball effect on
the internet for a while after this call to action article went out. People were just horrified that
their children were being dehumanized and othered in this way. And so yeah, I understand why
John Elder Robinson could no longer defend Autism Speaks and he resigned. The fact that there
are so many autistic voices being raised in protest against Autism Speaks says something.
I mean, their name is Autism Speaks, they don’t have any autistic people speaking.
And that brings me to my last point of why Autism Speaks is terrible. And this is harder to...
this is harder to quantify, but, you know, it’s the most important point. And it is how Autism Speaks raises funds.
They present autism in an inaccurate way purposely to raise money.
They use words like ‘epidemic,’ ‘crisis,’ ‘battle,’ they paint a horrific picture, and the reason that they’re doing this,
the reason that they’re fear-mongering, is to raise money. And you might say, you
"You know, so what, they’re raising money, so what if they use a, you know, a
negative message, it’s for a good cause." Except that only 3 to 4% of their budget actually goes
to families of autistic people. The biggest chunk of it goes to research to try to prevent autistic
people from ever being born. Not only are they not helping autistic people with the
funds that they raise, they are actively hurting us by spreading this message of fear and ignorance and hate.
And there are so many amazing, you know, “severely autistic” and nonverbal self-advocates out
there, like Amanda Baggs and Amy Sequenzia, and Autism Speaks doesn’t want you to hear
about them. Because if you’re hearing a message of hope and acceptance and neurodiversity,
and that just because your child won’t be living a “normal” life doesn’t mean that it won’t be a good life,
that’s not raising money for Autism Speaks. Autism Speaks profits by keeping parents
ignorant and by working on fear and pity to bring cash in from the general uneducated public,
and frankly, it needs to stop. When actual autistic people are protesting an organization
that claims that they help autistic people, you have a problem. When an organization that’s
supposed to be a charity is only spending 4% of its massive budget on actually helping autistic
people, you have a problem. When an organization that is supposed to help autistic people uses a
message of fear and ignorance and hate to scare up funds, you have a problem!
It’s time to say no to Autism Speaks.
Now that you’ve heard from an actual autistic person, you can read from the many
dozens of other autistic people who have put themselves out there and written about their
experiences online. There will be tons of links in the video description for you to
check out, and
now that you’re educated, you can help support autistic people. If you really care about
If you really care about your autistic child, you want a world for them to grow up in where they are accepted for
who they are, a world where there is not this culture of cure and fear and ignorance. You want them
to grow up to be healthy autistic adults, and you need to say no to Autism Speaks and their cure
rhetoric, and you need to say no to their message of hate and ignorance and otherness.
Now, that was a big rant, and I hope everybody watching is doing okay. I got a little bit
worked up myself. And I know that, while this is a pretty heavy and negative topic, I want
to end on a positive note. So while Autism Speaks is terrible, there are good autism organizations and
charities out there. Autism organizations and charities that focus on helping autistic
people, helping autistic children grow up and get the care that they need, helping autistic
adults to transition into the “real world” and find actual employment, things that are important
people, help and support that we need right now, not some theoretical cure that can never
really exist. These organizations are wonderful, and I’m going to link to them below. Again,
there will
there will be a ton of links in the video description, so check them out. But some of these organizations
are the Autistic Self-Advocacy Network, or ASAN, and their slogan is “nothing about us without
us,” and I just love them so much. There is the Autism Network International, the
Autism Society of America and the Autism Society of Canada are pretty good, and then there’s
the Golden Hat Foundation, which I don’t know much about, but it spreads a message of acceptance
and neurodiversity, and so that sounds – that sounds great to me.
I hope this video was helpful for people who wanted more information about why Autism
Speaks is so gross, and I hope it was informative to people who had never heard before, and
hopefully educating and eye-opening for you. And I think the best thing that we can do together,
all of us, is to spread the message of "say no to Autism Speaks, say no to cure culture,
say no to all this negativity about autism, and say yes to acceptance, and yes to love, and yes to Neurodiversity."
A note about updating: I am updating Ask an Autistic on Thursdays, but I’m going to be taking a
break every fourth week. So there will be three weeks of a video every Thursday, and
then there’ll be a week off. And this week off, it’s actually my birthday next week as well.
So next week is my birthday week and no video, but then the following three weeks after that,
there should be a video up every Thursday. This has been Ask an Autistic, and my opinions
on Autism Speaks, and I hope you enjoyed it. Thank you for watching!
[exit music – I want to write a song, to shine a light, be the change we want, set
things right, we've been waiting in the dark for so long...]