Autism Speaks Is Searching To End Autism
Autism Speaks has the ultimate goal of ending autism, by any means necessary.
The majority of their funding goes towards autism research.
Not research for improving therapies and equipment that helps individuals with autism, but research for a cure for autism.
They are also trying to find a prenatal test for autism, similar to the one that they have for Down Syndrome so that mothers will no longer have autistic babies.
As a mother of a child with autism, I wouldnt change a hair on his head. His autism does not define him, but it definitely plays a role in who he is. I would never take that away, and I would never, ever, wish that he hadnt been born because of his autism.
And frankly, as an autistic person, I cant believe an organization that claims to represent me honestly wishes I were never born.
Autism Speaks Only Evidenced Autistic Board Member Resigned
The charity behind the autism campaign Light It Up Blue remained completely allistic for a long time. This meant the funds raised throughout various efforts were distributed according to people who had no lived experience of the condition.
This did change in 2009 where they hired optimistic John Elder Robinson, author of memoir Look Me In The Eye. Over the course of four years he made various attempts to advocate for his community, believing he could make a difference.
When it came to his resignation blog post four years later, he stated: The absence of people with autism in governing or oversight roles has crippled Autism Speaks in its efforts to connect with the community.
Explaining his reason for resigning, he added the charity had delivered little value to autistic people the millions raised.
Though there are rumours of internal changes, eight years on were still left with little evidence of this. And how much can we trust a campaign when the charity behind it dont value lived experience voices?
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Very Little Funding Directly Benefits Autistic People & Their Families
The idea of Light It Up Blue is to raise money to support autistic people and their families. This campaign suggests that, too, but would it surprise you to know thats not the whole truth? In fact, the image below suggests very little of Autism Speaks yearly budget actually does that.
Source: ArtfullyAutistic, Medium
In reality, just over 1% of Autism Speaks annual budget goes towards family services. Being generous and assuming the 4% misc. costs help autistic people still takes up just 5% of the entire budget.
Research, on the other hand, takes a whopping 27% of their annual income. This is despite the controversy weve discussed above, and the past reputation theyve failed to shift. Even more worrying is the 48% that goes towards awareness, sharing harmful and outdated messages.
Autism Speaks is registered as a non-profit organization, which is definitely a good thing. Its worth considering Payscale reports their average salary at $78K a year, however, suggesting a large portion of their funding could be going towards employee costs. The same source also says their Executive Director could be earning as much as $169K in a single year. Is this really acceptable the small percentage of money they give to help autistic people every year?
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Which Colour Represents Autism
When done right, some colours become synonymous with the things they are used to represent. Take for example the healthy green hues of the Samaritans logo or the sleek, futuristic black of the Apple apple. Even in the world of literature, its hard not to see a hopeful yellow background with a powerful red centre and think of Superman. Yes, its a fact that, for any given thing, there is a colour to reflect it. But which colour represents autism?
This is a question which I have seen raised multiple times and, with the help of both my marketing degree and own perspective of being autistic, today I aim to find both an answer to what colour represents autism, while simultaneously frustrating every non-U.K. reader by spelling colourthe correct way the British way.
Myths About Neurodiversity And Autism Acceptance
Here are some common misunderstandings about the Neurodiversity Movement and Autism Acceptance, important to remember when thinking about and discussing autism acceptance this month:
- The Neurodiversity Movement is only supported by verbal, high functioning autistics. Verbal autistics are not the only individuals on the spectrum advocating for neurodiversity and autism acceptance .
- Supporting Autism acceptance or the Neurodiversity Movement means you are anti-therapy. Accepting autism does not mean that you renounce all therapy. It means you carefully screen therapies to ensure they are rooted in a respect for the autistic individual and that they let the autistic individual have input in determining the desired goals.
- Autism acceptance is a radical concept. Embracing differences, including autistic differences is an important part of loving your childs identity. There is nothing more normal and natural than that.
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Light It Up Blue Centres Children & Ignores Autistic Adults
My biggest personal critique of this campaign is it centres children and ignores us autistic adults. This promotes the infantilization of autism, and theres no evidence the campaign is challenging this.
It seems Im not the only one thinking this, however. John Elder Robinson suggests its a charity issue, as quoted from the prior-mentioned resignation post:
Autism speaks still has a base of support among families and young children, but it has very little support for parents of older kids, and autistic adults. And the fact is, that is the majority of the autistic population. Ive made that point in the past apparently to no avail. Ive suggested things the organization could do to garner support from those groups, but those suggestions have been ignored.
This quote suggests there have been various opportunities for this charity to learn from autistic adults. Yet despite efforts, it seems like they, and by extension Light It Up Blue, have been unwilling to take advice on board.
Light It Up Red For World Autism Awareness/acceptance Day
Its World Autism Day and many #ActuallyAutistics are wearing red to celebrate. Others will wear blue to support the awareness campaign initiated by Autism Speaks. The Light It Up Red Instead counter-campaign originated in 2015 to boycott Autism Speaks and recapture the narrative of autism awareness and acceptance. There are numerous articles detailing the history behind the tension between Autism Speaks and the autistic community. If you are interested in reading more about this, refer to the articles listed at the end of this post. So will you be lighting it up blue this year? Red? Purple? How can we best promote autism awareness, and, most importantly, acceptance?
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This Is Important To Me Because Of My Son Walker
Walker is five and hes had an ASD diagnosis since just before he was three. But hes been autistic since he was a flickering heartbeat on a grainy eight-week ultrasoundthe moment I fell in love with him.
When he was diagnosed, the developmental pediatrician that guided us through that process warned us about Autism Speaks. He said that their focus on a cure makes autism seem like a terrifying disease instead of a neurological difference. He suggested other places where we could seek out information about autism, and encouraged us to think about our child as different so we could accommodate him differently, but never, ever to think of him as damaged, broken or in need of fixing.
I am so grateful for that. Because of him, I chose instead to seek out autistic adults and listen to their advice. Our son has been free to be himself. We have chosen to limit his therapies to things that support interests he already has, like speech. We have understood from minute one that appearing neurotypical is not a goal he has, so its not a goal we will set for him.
My oldest son explains it to people like this: Our family is mostly made of computers, but Walker is an iPad. We are all really smart, and we can still communicate with each other even though we do different stuff. We are way different, but also way the same.
So You Want To Celebrate World Autism Month
Some people might use the colour blue at autism-related events, like Light It Up Blue or blue ribbons.
Some people might use symbols of puzzle pieces in posts about autism online.
A lot of people will talk about autism awareness, and a need for more awareness of autism.
All of these are used by people who mean very well. However, at AsIAm, we dont think these things are helpful or relevant when talking about autism.
Our Youth Leadership Team made this video to explain why.
Blue? When the colour blue was first used for autism, the people and groups who used it thought that autism was something medical that needed to be solved, like an illness or a disease. Light It Up Blue was intended to light the path towards a cure for autism.
But autism doesnt have a cure, and doesnt need one. It isnt a problem to be solved, its a disability and a natural difference that needs acceptance and understanding.
Plus, a lot of people dont think women and girls can be autistic, so only using the colour blue for autism doesnt help with that!
Awareness? when the YLTs parents were their age, almost nobody knew what autism was, theyd never heard of it. So we needed autism awareness. Today, most people have heard of it, or know someone on the autism spectrum. That doesnt mean they know anything about autism, just that theyre aware it exists.
What can you do instead during Autism Month?
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Light It Up Blue: Celebrating World Autism Day
Light it Up Blue: Celebrating World Autism Day
April 2nd marks the fourteenth annual World Autism Day and is the official kickoff to Autism Acceptance Month. This is a month we celebrate those with Autism and reflect on the impact they have had on our world and in our lives. We light it up blue to show our acceptance for a neuro-diverse community and their family and loved ones. We wear blue and change our exterior lights to blue to applaud this talented community.
This month, we can also celebrate the efforts that schools, clinics, and communities have made to build access and autonomy for the ASD population. Occupational therapy supports are increasingly becoming commonplace. An increasing number of schools and communities offer Applied Behavior Analysis therapy to identify the unique needs of each person with ASD and help them thrive in their life. Autism Speaks, PACT Institute, Plymouth Psychology Group, Autism Society of MN, and countless other organizations work to build an inclusive village for those with ASD and their families. The access to these resources used to be confounding and required word-of-mouth clues or hushed conversations. No longer is that the place as we talk openly and have a state the cultivates these approved supports through the Department of Health.
I Will Not ‘light It Up Blue’
It must be April, because my news feed is littered with calls for people to “Light it up blue for Autism Awareness”.
To be honest, it makes me cringe.
There are heaps of “Autism Awareness” going around. It’s what causes students at my kids school to “joke” and “tease” by saying things like…. “don’t do that, it makes you look Autistic.”
No. My kids don’t need #AutismAwareness — they need #AutismAcceptance.
Acceptance is different than awareness. Acceptance means that everyone is worthwhile, no one’s neurology is made fun of, and everyone gets the support they need without having to fight legislators to provide it.
This April I’ll be advocating for Acceptance. I won’t be supporting the Autism Speaks driven light it up blue campaign that raises money to research to find a cure.
I won’t be buying a Build-A-Bear blue bear so they can give money to Autism Speaks or Autism Awareness Australia either.
Here in Australia, many people have heard of Autism Speaks, but feel we are removed from their influence and do not need to weigh in on the stand against them.
I disagree. For two reasons.
1. I do not want Autism Speaks to assume that because Australians are not speaking up against them that they are welcome here.
2. We already have our own Autism Speaks here, in the form of Autism Awareness Australia.
Australians, please do not be fooled into thinking that we are safe from the Autism Speaks message here.
- The “Autism is a tragedy” dialogue
Is this what you want for your children?
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Children Grow Up And Many Come To See Controversy Hate
The results of a 2014 survey showed that autism rates in the U.S. are closer to 1 in 45 in kids from 3 to 17, higher than previously thought. In fact, that may still be an underestimation of the full scope, as females, minorities, and those without health insurance are still underrepresented. Autism Speaks focuses on prevention and treatments, which do very little for those with autism who are already here.
In fact, many people with autism find the cure-centric talk and fear-mongering to be highly insulting and harmful to how they are treated in society. Those with autism who have grown up see a very different view of this organization than people who do not have autism.
So, all the #actuallyautistic people are asking for is to be seen for who they are. For love, for acceptance, for the ending of fear and stigma, many people with autism ask that individuals and businesses not light anything blue, but go red, go gold, or just remember that those with autism do not want fear or pity, but acceptance. They only wish to be seen as people, not as a puzzle piece.
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The Colourful History Of Autism Colour
While the world of autism was a blank canvas for much of the late 20th century, with most of the discussions surrounding autism taking place in laboratories and psychologist catch-ups , changes in understanding in the early 2000s meant that autism awareness became a top priority for the newly formed autistic community and, as such, we needed colours to fly our flag and grab attention.
For better or worse , many gravitated towards the colour blue due to its connotations with calmness and acceptance. However, at that time, blue was also chosen as autism was widely considered a male-only condition an idea which has since been proven wrong and, in many ways, damaging for female representation on the spectrum.
In stark contrast to the Brit boy band of the same name, Blues popularity only rose during the late 2000s. This was due to a myriad of factors but rooted at the centre of them all was the American charity Autism Speaks which was launched in 2005 and featured a blue puzzle piece as their logo. The colour then gained further traction in 2007 when the same charity created the Light it up Blue campaign: a World Autism Awareness Day initiative, which saw landmarks, celebs and everything else imaginable bathed in the charitys colours around the world.