Friday, April 4, 2014

Autism Awareness, Light it up blue, and other problems

I know I am overdue an end of March post, but I've been so busy and I want to catch you all up on what's happening for "Autism Awareness Month" in my neck of the woods. 

The most exciting news is that The Huffington Post republished an article I wrote on my Amazing Adventures blog. The post is called "I will not light it up blue". I'll let you go read it to find out why. You can read it on the Amazing adventures blog or on The Huffington Post website, or on the Aussie Mum Network website (because they are running a series I edited during April too, so if you go there click around a bit to see the other posts).

We've been having some fun on the Amazing Adventures Facebook page too, making and posting memes like these.....

The 5 images above are all of smiling Autistic people next to a caption that says 
"I need your ACCEPTANCE much more than I need "Autism Awareness"

 I've said it before, but April is always a good time to say it again. Running campaigns for "awareness" does little for Autistic people.  Especially when the groups running the campaigns have the motive of raising money so they can pay their own salaries run programs that have been determined by non- Autistic people as helpful for Autistic people. 

Rather than rewriting my thought on this I'm going to jump on the republishing bandwagon and share with you a post I wrote for Amazing Adventures. You can find the original here.

"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, speak on the behalf of my children. And I can tell you with all certainty that World Autism Awareness Day 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 someone 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, please, please, help me spread the word that what Autistic people need is ACCEPTANCE not awareness.  

For my kids. Please.