Be(a)ware

Nobody likes being scammed. Knowing that someone has told you a story that is not entirely true in order to convince you to give them money leaves us all feeling angry and insulted. Rightly so. We have learned to recognise it in many contexts, like marketing calls and tv advertisements,where we easily acknowledge when some one is trying to rip us off. But in other areas we seem reluctant to recognise that the people saying they are helping might not be. Like some organisations promotion of Autism Awareness Month.

Those of you who have been reading my blog for a while know where I’m going with this. Those who are new, here’s a summary of some background information:

Autism Awareness Month and Day have been around for a long while now. They are endorsed by the United Nations as a tool used to raise awareness of autism. There are many groups and organisations that participate in this awareness raising, using different marketing strategies and events. A lot of them take the opportunity to do some pretty serious fundraising during April too. They say that they are taking your money to raise awareness.  Which sounds good, doesn’t it?

Let’s look at some of the events and some facts about them and the organisations that run them.

“Light it up blue”, an initiative of American company Autism Speaks would have to be the best known, so let’s start there. This campaign tells us that in order to help the families of “people with autism” (and the “people with autism” as well) we “raise awareness” of autism by using blue light bulbs, wearing blue clothes, putting blue stickers on our cars, wear jewellery with puzzle pieces on it, and do all this while participating in “walk for autism” events. We are encouraged to donate money to Autism Speaks because they are “advocating for the needs of individuals with autism and their families”. Oh, and they are “the world’s leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders…” { source: Autism Speaks website }

In Australia we have Autism Awareness Australia, who state that their goal is “to improve the lives of all Australians on the autism spectrum and the families who love them” { source:  Autism Awareness Australia website }. AAA also participate in light it up blue, in fact they fund the blue lights that will shine on the Sydney Opera House this April, and use that as the basis for a very expensive fundraising dinner held beside the harbour, at which rich people eat expensive food and congratulate themselves for making people aware of autism.

So, that’s a really brief, really simplified background. Now I want to tell you what I think and why I think it.

I think it’s a scam.

A quick look at the financials of both AS and AAA (and these are not hard to find if you do a search on the web) will tell you where their priorities really lie.

Autism Speaks spends roughly 96% of the donations they receive on salaries, administration costs, research and advertising and about 4% on actually helping Autistic people. They would argue that the research part is helping Autistic people, but the truth is that research toward finding an early (prenatal) test for Autism – which would undoubtedly lead to termination of pregnancies deemed to be high risk of resulting in an Autistic baby (look into the trends around testing for Downs Syndrome and the current birth rates if you don’t believe me) – is something that exactly zero of the Autistic people I know would find helpful. Honestly, we’d rather be alive and Autistic than victims of genocide. I suspect you’d feel the same in our position.

Autism Awareness Australia spends lots of money on travel (!!), salaries, education programs and blue lights, but not really very much on helping Autistic people. They would argue that awareness and education is helping, but the education they promote is around behaviour modification therapies designed to normalise Autistic people and train them not to behave like …. well, themselves, actually. Again, I can tell you that exactly zero of the Autistic people I know want to be trained not to stim as a way of meeting their sensory regulation needs, or to comply with the somewhat arbitrary social norms our society is so attached to, like making eye contact and long loud social gatherings.

Neither of these organisations is really intent on helping Autistic people. They are interested in supporting lives “touched by autism”, but that’s not the same thing. When they talk about “lives touched by autism” they mean the families of Autistic people, who feel their lives have been adversely affected by the existence of an Autistic person. How do I know this? I had watched and read their promotional material.

I’m going to focus on AAA now for a bit, because they are in Australia, and I am Australian. I can say that Autism Speaks has similar material and uses similar tactics.

One of AAA’s self labelled achievements is a video called “What are you doing?” which they have sent to every school in Australia as a resource to help children understand their Autistic peers. To see the full video, you’d have to have watched it at school, or pay for a copy, but the trailer is available on Youtube here: https://www.youtube.com/watch?v=rguyTZeeQv8

The trailer sums up the video, using soundbites from a group of children and teens who are siblings and friends of Autistic kids. It is narrated by Tom Gleisner, an Australian TV personality. There are no Autistic people in the trailer, and based on the statement Tom makes at the beginning of the trailer- “These kids are the brothers the sisters and the friends of kids with autism, and they’re going to help explain what autism is….”- it seems that there are none in the video either.

The trailer uses quotes such as  “…it sort of seems like you’re in your own world…”,“You can tell someone has autism if they… um… like, make weird groaning sounds.”,“…not making very much sense, flapping their arms about…”,

goes on to compare Autistic children to icebergs, while other kids are sailboats, and ends by telling viewers that underneath Autistic kids are “perfectly normal” and “just because a kid with autism is different, it doesn’t mean they won’t turn out to be the best friend you’ve ever had…. ever.”

It is hard to imagine that a film that uses such phrases to describe Autistic people, and asks kids to be friends with them even though they are different because it might benefit the non-Autistic kid, will do much to help to help Autistic people.

Another of AAAs awareness strategies is the short video “Autism Awareness” (https://www.youtube.com/watch?v=_7IFs3cIRak), hosted again by Tom Gleisner, and features numerous other Australian TV personalities saying thing like

“More children will be diagnosed with Autism this year than with AIDS, diabetes and cancer combined”, “no-one knows the cause, there is no cure”, “Autism is stealing the minds and personalities of a generation of Australian children”, “30,000 Aussie kids have been kidnapped….. by Autism”, “Don’t let Autism have the last say in a families life”

The video blatantly uses fear tactics to convince people to donate to them. The message is essentially that Autistic peoples lives are hopeless unless people donate money to save them. This is just not true, and perpetuating a discourse that reinforces stereotype and  stigma against Autistic people while packaging it as something that helps is not only the opposite of helpful, it is dangerous and irresponsible.

As a parent to Autistic kids, I have been opposed to these campaigns and tactics. I do not want my children to grow up in a world where people think that a month of talking about Autism in a negative light is in any way an appropriate strategy for improving their lives. My kids do not need people to be aware of Autism, especially when what that actually means is “beware” of autism. My kids need people to accept them, just as they are, and recognise that they are valuable and valued human beings who do not need to be changed. My kids need people to be willing to support them when the environment is causing them problems. My kids need people to see the value in diversity and look at them as people with some thing to offer, not something to be tolerated.

As a recently identified Autistic person myself, I want you to know that if you think that being “aware” of autism means you are doing me a favour, you couldn’t be more wrong. I don’t want you to look at me and see deficits and tragedy. I don’t want you to look at me and see my achievements and marvel at how inspirational it is that I have done them. I don’t want your pity, your admiration, or your kudos for the way I live my life, and I am tired of having to witness the relief in your eyes that your family is not like mine. I don’t want to be confronted all through April by the messages that Autism is something to beware of, so we all need to give money to organisations who frighten you into thinking you’d better pay them to do their research so you don’t have to risk putting more people like me into the world.

That’s not what you are thinking of during Autism Awareness Month? Ok, then…. instead of turning your profile picture blue and sharing articles about awareness, please support activities and initiatives organised by Autistic people. You’ll know them because they focus on acceptance and celebrating neurodiversity.

My favourites are Autism Acceptance Month, Tone it down Taupe, Red Instead, Boycott Autism Speaks, and any of the numerous blogs written by Autistic people who want you know know that we are happy, we are proud and we do not need to be researched and cured. I will be sharing posts that celebrate Autism, Autistic people and Autistic culture from my Facebook page all month. I’ll also be using hashtags #AutismAcceptance, #IWillNotLIUB #BoycottAutismSpeaks #RedInstead and #LoveNotFear. Please join me.

 

Screen Shot 2016-03-22 at 10.55.35 PM

image is text “This is the only way I will l light it up blue” and shows a picture of a blue candle in the same colour as Autism $peaks on a black background. The candle is in the shape of a hand with an aggressive middle finger, painted black nail with a yellow and orange flame coming out of the middle finger, sitting in a traditional style grey candle holder. image source: The Bullshit Fairy  Shared with the BS Fairy’s kind permission.

 

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4 thoughts on “Be(a)ware

  1. Christine says:

    Awesome! I been looking for someone to say what I’m thinking! You hit the nail right on the head, very inspiring, thank you so so much!
    ChristineJ.D.

    Like

  2. Annabel Dayal says:

    Agree with you Christine.
    It is my view that labelling human conditions using behavioural /medical ‘diagnoses’ against quasi social norms divides rather than embraces difference. What a boring life if we were all exact copies.
    There seems to be a strange tension between our ideas of individual difference and what is socially acceptable. Whatever happened to the notions of different learning styles, personality quirks, of putting ourselves in other people’s shoes to see the world from their point of view etc.. Educationally we seem to be way off beam!
    This newer term ‘autistic spectrum’ does little to help if we keep giving it to explain without understanding the world view of the person asked to wear the label. Our ways of being in this life are guided and nurtured by those around us. A positive spin would help.

    Like

  3. The Every Gamer's Review says:

    Reblogged this on Every Gamer's Game Strips and commented:
    As an Autistic person, it’s nice to know that I really do have a piece of mind. But really, these Autistic charities shown here is wrong on so many levels, from treating Autism like a disease to horrible propaganda. If anyone asks why I’m the way I am, I’ll just say that I’m just being me and being me separates me from the clones. I highly recommend that you read this. Thanks!

    Like

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