Thursday, April 2, 2015

Are You Aware?

Today is “World Autism Awareness Day” and this month is “Autism Awareness Month”. I am not, even in the slightest way, excited about this. 

Seeing all that blue makes me ill.

Reading stories from parents who have nothing better to do than to whine, complain, humiliate their kids to garner sympathy and twist the words of neurodiversity activists is beyond anything I can take.

Of course, April isn’t the only time these things are present, but it is a time where it is the most concentrated because parents have a special month all to themselves.

Wait! What? Autism Awareness Month is for parents?

You may be thinking “Well I thought Autism Awareness was for Autistic people, you know those who actually are Autistic”

Well, you would think that a month dedicated to the "awareness"  of a certain group of people would actually be for them. You would think that those people might even benefit from the "awareness."

That type of logical thinking will get you nowhere with “autism parents”  though,  because autism awareness is anything but about Autistic people.

Autism Awareness is about how hard the lives of autism parents are.

Autism Awareness is about how broken Autistic people are.

Last year Autistic activist Amy Sequenzia penned the tongue in cheek piece "April is Autism Speaks Awareness Month" where she describes a pseudo-disorder called "Autism Speaks Rhetoric Disorder" (ASRD). Amy lists the symptoms of ASRD as:

  • People who contract ASRD will begin giving a lot of money to Autism Speaks walks that lead to nowhere; 
  • They will have a fascination for blue lights and puzzle pieces, believing these symbols help Autistic people; 
  • They will slowly lose their ability to question absurd claims that do not have much in common with the reality of their lives and with who their child really is; 
  • They will become so lost in the symptoms of this terrible disorder that they will not notice that not even one of the promises of help from Autism Speaks has been fulfilled;
Amy goes on to list more Characteristics:

  • The one characteristic that makes ASRD so tragic is the fact that many parents allow the worse flare-ups of the disorder to cloud their love for their children. They stop helping building the child’s self-esteem.
  • They stop presuming competence 
  • They stop dreaming
  • They lose hope 
  • They miss every awesome moment 
  • They give up

While Amy's piece and ASRD are satirical, the sad fact is this is also very much a reality. These are the types of people that we hear from when it comes to autism and they drown out the voices of Autistic people.

Last year, I received an email from my son's school asking him to wear blue to school for "Autism Awareness Day". I was beyond furious. Their email started out like this: 

"As most of you already know, April is Autism Awareness month. April 2 (tomorrow) is WORLD Autism Awareness Day. We really would like for everyone to wear BLUE tomorrow to help with raising awareness of Autism."

Over half of that school is Autistic, so I'm pretty sure everyone there was aware. So, I was confused. I sent them back an email:

"I don't know if you are aware, but I am on the Autistic spectrum and we do not participate in autism awareness month in our home. I am actually a part of a huge Autistic community and we celebrate Autism Acceptance Month in lieu of "awareness". 

D will not be wearing blue, because we don't support autism speaks in this household. Light it up blue and the color blue for autism awareness are autism speaks initiatives. Please also let everyone know that since the school is participating in this, I can not, with a good conscious send him to school to be subjected to the very thing we are against."

You see what I did there?... I used the word "Aware" .

Personal Note: My son no longer goes to this school,but not because of  this incident. However, one could say ASRD was the cause of me having his placement changed

The phone call I received a few days later started out with how they didn't mean to offend me, but they were not doing blue to support Autism Speaks, only to honor "kids with autism" and give them a special day. 

Which brings me to my next points: 

First off, Light it up Blue for autism came about because of Autism Speaks, they created it. They also chose the color blue because more boys are diagnosed Autistic than girls.

Second, if you are doing it to honor a loved one you do not need a special day or month to celebrate their neurology. Autistic and other neurodivergent kids should feel celebrated and proud regardless of what day or month it is. 

What makes it even worse is the driving force behind the color blue and awareness campaigns is how horrible autism is and how Autistic people wreck the lives of others. 

They say: BEWARE, Be Afraid, Fear Autism...

These campaigns do nothing to really educate anyone about autism. 

Image courtesy of  www.facebook.com/boycottautismspeaksnow
Image description: picture of home under a
giant rock. The background of the image is
 blue lights. Text reads:
Can the three people that aren't 'aware'
of Autism even see the blue lights from
where they must live?
Sure, if you ask someone if they have heard of autism they'd probably say yes. But, ask them what they know and the majority will either spout of misconceptions or say nothing at all. That is what Awareness campaigns accomplish. 


Awareness campaigns tell the public that Autistic people are outcasts in society because of their autism. 

They tell society that we are completely miserable, that we are trapped, that we have been kidnapped from our families, stolen, lost... 

But,the people running these campaigns don't ask Autistic people if that is how they feel. They tell us that is how we should feel and to "shhh be quiet, because grown-ups are talking." 

They are the ones making us the outcasts by deliberately excluding Autistic people from our own advocacy. 

Autistic people need Acceptance. 

Awareness campaigns do not bring about true Acceptance and authentic inclusion in society. They bring fear and even more exclusion. They turn autism into a fashion statement, a money making scheme, something to make other people feel good... while still making sure Autistic people are outcasts. 

It's time we stop blue-washing the month of April and move past Autism "awareness". 

It's time to promote Autism Acceptance and a good start would be to hand over the "autism platform" to people who are actually Autistic.

2 comments:

  1. I just read this. I sent a similar email to my daughter's teacher after getting the 'week blue' newsletter!

    ReplyDelete
  2. I totally agree with you. Great article!

    ReplyDelete