You may have noticed a lot of people on Social Media using frames for their profile pictures, it’s become a bit of a fad, like: ‘Puppies are great’, or ‘Facebook frames suck’. Stuff like that (I may have made the last one up).
Now, I’m usually a calm and placid man, but there is one frame in particular which generally provokes a reaction in me, usually only seen when a member of the Government appears on the television and tells us how lucky we all are (kind of a grab the nearest heavy object and beat the crap out of the screen type reaction).
The Autism Speaks frame… You’ll have seen it. This one:
Excuse my profile picture lurking in the background (Hunt me down and add me if you can find me)
So, a little background to Autism Speaks is necessary. I won’t go too far in as others have done and are doing it better such as:
Or, The Autistic Self Advocacy Network (ASAN) who have a series of articles on Autism Speaks including ‘Before you donate to Autism Speaks, consider the facts’ and condemnation of President Trump and his decision to support Autism Speaks by letting the Whitehouse ‘Light it up Blue’
Or, This Outnumbered Mama on why she condemns Autism Speaks with condemns Autism Speaks with ‘4 simple reasons why I don’t support Autism Speaks’
Or, Kirsten Schultz with her fantastic collection of articles by Autistic people, parents and allies, plus articles showcasing the reasons for not supporting or donating to Autism Speaks with reasons for not supporting or donating to Autism Speaks with ‘A roundup of posts against Autism Speaks’
Or these two fantastic connected articles by Eve Reiland, The American Badass Activist:
The first is the start of her following the money trail and questioning if it is the pursuit of profit which causes Autism Speaks, a non-profit organisation, to silence Autistic people infollowing the money trail and questioning if it is the pursuit of profit which causes Autism Speaks, a non-profit organisation, to silence Autistic people in ‘#ActuallyAutistic Adults | Are we being silenced by a Community Business Organization for Profit?’
And, an article investigating why Autism Speaks wishes to make the narrative of Autism entirely about Learning Disabilities, when a significant portion of Autistic people do NOT have a Learning Disability, with ‘The #AutisticSilencers hurt all Autistics’
I could go on, I probably should, but that’s not specifically what this article is about.
***I’d like to point out that I have not linked to Autism Speak’s website at all throughout this whole article, despite the fact that it would have made my life easier to do so when writing this. The fact is that i do not want to be responsible for any clicks going from my site to theirs. If you feel the need to visit their site, feel free to use a search engine.***
Autism Speaks is by its own volition, a US ‘charity’ that represents Autism. Here’s a hint: it doesn’t.
And just because it’s an American charity, shouldn’t put off any readers from the UK or anywhere else in the world, I have an article specifically on Autism Speaks and it’s influence in the UK and, if they’ve managed to have an impact on the UK then there is no reason why they haven’t had an influence on other countries, not to mention that Autism Speaks is a global brand.
The majority of the Autistic community, of which I am part of, is opposed to Autism Speaks. That should be enough right there. The fact that Autism Speaks is known in the Autistic Community as Autism $peaks or A$ should be really telling… If a majority of a community are opposed to an organisation that “represents” them, that should be enough. Surely? Obviously not.
They present themselves as a family friendly organisation supporting those with Autistic children. The way they do this? They sink nearly 60% of their income into medical research. The reason for this? They want a cure. Oh no wait, no they don’t want a cure anymore, they changed their mission statement. Which is awesome! But, wait, hold on… What’s this? They’ve teamed up with Google to fund a genome project… Why would they do that unless they wanted to find a cure…? Hmm, I can feel another article coming on about that alone…
Ask any Autistic adult if they want to be cured and i am pretty sure 99% will tell you the answer is no. Autism Speaks though, are looking for a cure regardless, firstly through pharmaceuticals and secondly through genetic research. Here’s a lovely article by Laine Eartharcher that delves into the cure history of Autism Speaks called ‘Why Autism Speaks is Bad: It actually hurts Asperger’s/Autistic People’
They want to cure autism through drug therapy. Drugs that change both the physiological and neurological nature of the autistic person.
They want to cure autism through genetics. They are searching for the gene/genes that cause autism and want to eradicate it (Science lite). A term you may have heard of is Eugenics. It’s a popular science amongst the alt-right, neo-Nazis, Fascists and Autzis(you get my point), people who want to remove certain sections of society such as the physical and mentally disabled, people of colour, LGBTQ, Jews, Muslims (that’s a recent development.) Basically, anyone who they think is a weakness and detracts from their glittering Eden of Aryan supermen).
Funnily enough there is also a history of association between Autism Speaks and refusal to condemn support by Neo-Fascist White Supremacist organisations. I guess if there was a saying it would go something like:
“Preach Nazi ideology, get followed by Nazis”
Eugenics and Fascists leads me nicely to Ableism.
Ableism is defined as “Discrimination in favour of able-bodied people.” Now that discrimination is the unjust or prejudicial treatment of different categories of people. So in this case, disabled people (like it or not, we Autistics are socially and often physically and mentally disabled – through no fault of our own).
So, Ableism is being prejudiced against Disabled people… So if I were to describe or infer that a certain person or people who were mentally, physically or socially Disabled, were missing a piece, or were incomplete…
People, I give you the Autism Speaks logo:
A single jigsaw piece.
A missing piece of the puzzle.
A few ants short of a picnic. A few bricks short of a wall. So you see where I’m going here?
What exactly are we missing, are we incomplete? Autism Speaks seems to think so. They want to fix us, put us right, make us like them.
Not to mentions the other connotations that those jigsaw pieces have.
Also: “It’s time to listen”… Yes. Yes it is. It’s time for Autism Speaks to listen to Autistic people when we say “We don’t want you!”
So we see the world differently to you. We may speak and act differently to you. So what? Just because we don’t fit in with your Neurotypical view of the world, we are missing something? I don’t think so. Anyway, if the ever increasing numbers of Autistic people scare-mongered by Autism Speaks and other organisations (usually Conservative American ones) is true, then you’re not going to be the Neurotypical ones for long. We are. Don’t have nightmares…
Which brings me finally to fear. Autism Speaks promotes fear about Autism. Autism Speaks prey on the fears of parents and caregivers, along with the naive who give and share, blind to what Autism Speaks actually do, which is seek to fundamentally change your children. Parents want to fix things, parents want to take the pain away, parents want their kids to cope with day to day life and i can appreciate that part. The point remains though, that there is only so much they can do and they berate themselves for this and feel their own pain and hurt, which is when Organisations like Autism Speaks swoop in, fuelling their fears, promising cures, dangling the carrot of help to the wider family and friends and those who want to help all for the price of $5 a month or whatever they can afford.
But what Autism Speaks wants is to batter the Autism out of our children’s bodies in any way possible. To prevent beautiful Autistic children from being born. They use videos about looming shadows and how your lives as parents are going to be ruined by this screaming, uncommunicative demon living in your house.
Videos like this one, entitled ‘I am Autism’
(Please think carefully before watching, it’s genuinely disgusting):
As an Autistic person, who grew up with an Autistic Sister, likely Autistic Father and Grandparents and three Autistic nephews. As a parent of a child (probably children) with Autism, as someone who has worked closely with Autistic children and Adults, who has many, many Autistic friends and acquaintances. As someone who communicates with other Autistic people on a daily basis pretty much from the moment i get up until i go to bed at night, I can confirm its bullshit. Autism is not something to be afraid of.
Yes, its fucking hard at times, a LOT of the time if I’m honest, but so what? You are parents, you took the time to have a child, you bear the responsibility for that child and any issues it has throughout it’s life. The constant uncontrollable and unpredictable meltdowns, the self harm, the lack of communication, the physical violence,the rocking and crying, the misunderstandings, the intelligence, the absolute genius, the sheer immensity of emotions, the heart-melting moments of love and adoration. Its a melting pot, not to be cured with drugs or gene therapy, or treatments, but with guidance and love and patience. Do not be fearful, be amazed. You signed up to be a parent, you take the stuff life throws at you and however hard you have it, just remember this, the Autistic person has it a thousand times harder, however much you’re struggling, the Autistic person is struggling more.
I could harp on about their Facebook tactics and how they use subversive tactics utilised by Britain First (where you are really sharing the logo, not really the cute post about puppies), but i don’t think i need to.
I could tell you about their board of directors and how they earn 6 figure salaries (so charitable) and I could preach about the fact that up until 2015 not a member of their board or senior staff has been Autistic, apart from one, John Elder Robison. Who quit saying:
“I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people. We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents, or society, or genes to be eliminated. We are people.”
I could link you to videos, like this excellent one by Autistic Advocate, Amythest Schaber, from the wonderful blog, Neurowonderful:
Or this one by Mr Enter, which breaks down the Commercial I showed above and adds his own opinions about Autism Speaks:
Or this one, a documentary made by Autism Speaks, which only covers the ‘negative’ aspects of Autism and has a queue of parents talking about how terrible their lives are and how ‘bad’ Autism is, to the point where one of them admits to wanting to kill her child, all IN FRONT of the child they are talking about:
Autism Speaks, does not represent Autistic people, as it claims, nor does it represent Parents and families of Autistic people. It hates Autistic people, it silences us at every turn. We are the reason Autism Speaks no longer has reviews on it’s Facebook Page, or comments on its YouTube channel. Autism Speaks uses families to its own end, it’s created an army of people who fight in its name, who are convinced they are doing right by their children by hurting them in the name of this organisation that hates their children.
What Parents need is support and education. Money should ploughed into that, not into cures or preventatives. Money should also be ploughed into the Autistic community, helping to create a voice that can be heard. Supporting advocates who can represent and speak for the community with authority, who can really speak on our behalf, communicate our needs, forcing society to meet us, not forcing us to meet society.
And in all this, Autism Speaks is all about the non-Autistic, all about the parents. What the parents want for their children, what the parents do out of love or want out of love. No mention that those children grow up after their therapies and drug regimes and all that has happened is that they have been rammed full of coping mechanisms. Coping mechanisms which yes, help them fit in day to day, which mean little Johnny can go to the shops and not have a meltdown, which mean little Johnny can go become a productive member of society, he can shake someones hand, maybe get a job, or have a relationship, or have children.
Yay, they survived the day, the week, the month. But that’s just it, they survived, the Autism is still there. All those taught coping mechanisms have squashed it down, suppressed it inside them, so outwardly they are relatively functioning but inwardly a stick has been stuck in the propeller that runs them, metal is crashing and grinding, shards flying everywhere, causing their brains to sputter and fart and speed up to unimaginable speeds and grind to halt. So their marriages fail, they have kids and can’t cope, they find themselves unemployable, or dive nose first into a career so much they disregard the outside world. They suffer extreme depression, constant anxiety, they withdraw and hide. Families are broken and limp along, or shatter. This might seem extreme, but it isn’t. For every one person that muddles their way to the end, suppressing and coping all the while, there are ten that take the paths i described above. Just because one has the ability to change things, doesn’t necessarily mean that they actually should.
I just have to mention that Google and Autism Speak’s collaboration into their Gene sequencing project again, Do you know what it’s called?
The web address is literally www. mss.ng
(I’ve deliberately left a gap in the address, so if you want to find it, you know what to do)
If that isn’t bloody scary for every Autistic and Autistic Ally on the planet, I don’t know what is…
Getting back to the point
When you see the Light it up Blue Facebook frame, please show the owner this article.
When you see the calls to ‘Light it up Blue’, please tell people not to and explain why.
They won’t like you for it (that’s the nature of people I guess), and a significant amount will ignore you, but if enough people keep saying the same thing over and over, maybe some of it will stick.
There are better ways to do things, better ways to give support, better ways to raise awareness, better ways to offer Acceptance, better ways to show solidarity – for starters try talking to Autistic people, find out what we want, what help we need.
If you see the Autism Speaks logo please, please, please light up the blue touch paper and blow the bastard up.
Autism Speaks, but it does not speak for Autistic people.