THE BLOG
04/02/2014 09:38 am ET | Updated Jun 02, 2014

I will not 'Light it up Blue'

This post originally appeared on Amazing Adventures Parenting Autistic Children

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.

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

  • The use of pathology-related language, such as "complex neurological disorder" and 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." "Thirty-thousand Aussie kids have been kidnapped, by Autism." "Don't let Autism have the last say in a family's life.")

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 of people accepting 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????

No?

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.