Friday, March 21, 2014

World Autism Awareness Day doesn't actually help Autistic people

First some history from Wikipedia:

"World Autism Awareness Day has been held every year since 9 September 1989. It was designated by the United Nations General Assembly resolution "62/139. World Autism Awareness Day," adopted on 18 December 2007, proposed by Qatar, and supported by all member states.[1][2][3][4] The resolution had four main components:

the establishment of 2 April as WAAD
participation of UN organizations, member states, NGOs and all private & public organizations in WAAD
raise awareness of autism on all levels in society
to ask the UN Secretary-General to deliver this message to member states and all other UN organs.[3]

I suppose in 1989 a World Autism Awareness Day may have been useful in some ways. After all, at that time the diagnosis of Autism had only been available for about 40 years, and Autism was not something most people knew about. In fact, in the 1840's Donald Gray Triplett, now in his early 80's was the first person ever diagnosed Autistic. Although I can't speak on his behalf, I'm pretty sure that World Autism Awareness makes no difference to Donald in his every day life.

I can, however, tell you with all certainty that World Autism Awareness Day does not help my children. It does not stop students at my sons school calling him stupid when he has to seek clarification on work tasks because he didn't understand the way the teacher communicated.

World Autism Awareness Day does nothing to stop students at my sons school calling him rude when he tries to assertively explain his viewpoint in his sometimes monotone voice.

World Autism Awareness Day does not prevent people from staring at my daughter if she has a sensory overload triggered meltdown in a public place and making snide comments about her needing a good spanking.

World Autism Awareness Day doesn't stop a mother in my community referring to my children as c*#^s who have behaviour problems because of my parenting and insisting they can't be Autistic.

Those kind of situations can not be helped by awareness.

I would actually argue that awareness can in some instances can hurt my kids. Like when students at my sons school say to each other- "don't do that, it makes you look Autisitc". I'm not going to break down for you how many ways saying something like that is wrong (mostly because, to be completely honest, I can't stand the thought that you might have been reading my blog for a while and still not know why that statement is so offensive). But I will say that hearing his neurology referred to as an insult breaks my son just a little bit more each time it happens.

There are others who agree with me. They are Autistic adults. When I asked them if World Autism Awareness Day helps them they said:

Kassiane- "yeah it helps me by making the world more aware that I don't exist, but would if I was a 6 year old white boy. And then when it finds out I do exist it reacts in a way that's a really awful amalgamation of insisting on denying my existence and acting on every awful hyperbolic stereotype, thus resulting in me being invisible except when people are wiping their asses with me.

Oh wait that's the opposite of helping."

Lei- "Awareness does not help me. I am aware of a great many things, but that does not mean I understand or accept them. Almost everyone I've ever met is "aware" of autism. That doesn't mean they accept me, or think it's okay to be like me. It just means they recognize my existence. That just seems weird to have a day set aside to say "Yay! You exist" and nothing else. I don't think it helps anyone to be tolerated once a year. I do plan on "celebrating" that day by reframing it as Acceptance Day and using it to open the library and hopefully, to change some minds about autism, acceptance and the value of human diversity."

Accpetance on the other hand...... true acceptance of Neurodiverstiy..... true acceptance of the idea that everyone is valuable just as they are and has something of worth to offer even if they are part of a minority group..... that would help my kids and my friends.

Acceptance of difference would stop students making value judgements on people needing communication clarified. 

Accpetance would make it inappropriate to make jokes and form insults based on someones perceived differences. 

Acceptance of things we see but don't always understand would mean I and my children would not be subject to criticism and hurtful comments when things get hard for us in public.

Acceptance is the only way my kids are going to grow up and not have to face the societally induced struggles my Autistic friends have faced in their life times.

And let's face it, no one wants to know their kids are going to grow up having to fight every day to be deemed worthy by their peers just because they process information differently and need more support than most people do.

No one wants to know their kids are going to be the butt of jokes and snide remarks because their voice doesn't have the same range of intonation as other people.

No one wants to know their kids are going to grow up knowing that one day a year they are celebrated but the rest of the year they are going to have to "tough it out", "suck it up" and "just do what you can not to draw attention to yourself and you'll do fine".

No one wants that for their children.

So World Autism Awareness Day does not help my children. Or my friends.

I am asking you to please help me spread the word that what Autistic people need is ACCEPTANCE not awareness.

Saturday, March 15, 2014

I will not "Light it up blue"

It must be nearly 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 is 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

Accpetance is different than awareness. Acceptance means that everyone is worthwhile, no-ones 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 them 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 AS 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. 

You only need to watch Autism Awareness Australia's awareness video to hear it....


.... use of pathologising language ("complex neurological disorder", comparing Autism to aids, diabetes and cancer,etc) 

..... the "Autism is a tragedy" dialogue ("...improve the lives of families with Autism", "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")

Image is of a young Autistic girl with blond hair wearing a hat and smiling.
The background is purple, and text reads
I need your ACCEPTANCE much more than I need "Autism Awareness"
I will not support an organisation that sends out the exact same message Autism Speaks does. 

I will not support an organisation that tells my family, friends and colleagues that my life is difficult because of my children and that their lives are hopeless unless people donate money to save them.

I will not change my mind about supporting Autism Awareness Australia until this message from them changes. Not even if you point out that they are doing a few good things along the way. The harm their message does to my children is real. The damage their message causes to the possibility people will accept my children as valuable the way they are is immeasurable.

And this..... THIS ..... is why the "Autism as tragedy" message of Autism Speaks and Autism Awareness Australia is so damaging..... because it leads to this:

"When I am open about being Autistic, I am handing people a weapon to punish me with. This was not the first time that my autism has been invoked during a disagreement. I have ended up leaving so many communities because I was told that I was only disagreeing because my autism meant I didn’t really understand. I have been told I am having an unreasonable meltdown when I am calm and polite but the other person is agitated and using curse words. Anytime someone wants to dismiss my opinion or experience, they point out that I am Autistic, as if that trumps anything and everything. They remind everyone that I am not reliable, that my word means nothing, that I don’t understand anything.

"Telling people that I am Autistic gives them the opportunity to understand me better. It also gives them the opportunity to dismiss anything and everything about me as irrelevant, deluded, pathological, unacceptable. No one has to provide a logical counter for anything I say because my words are Autistic words so they mean nothing. They are merely symptoms and can be disregarded." 

     Sparrow, from Unstrange Mind. 

Is this what you want for your children? 

Really think about it- how would you feel if we took a month of the year to promote that everyone be aware of you and the fact you need fixing???? 


Then let's change the message. 

My kids don't need curing. They don't need fixing. They don't need changing. 

It is society that needs to change, and Acceptance of all is the key.

Note: this article has been republished at The Huffington Post. Click here to view.