April is Autism Awareness month. On April 2nd, the world’s monuments, statues, buildings, and landmarks were illuminated with a vibrant blue glow for World Autism Awareness Day (WAAD). We “light it up blue” to shed a light on Autism. The LIUB campaign began with Autism Speaks, the world’s largest Autism Advocacy organization.
Like many families dealing with Autism in one way or another, I am lighting it up blue as well. Recently, as I was scrolling through my facebook newsfeed, I came across one of the many Autism Speaks posts promoting the LIUB event. As I went to click that little “Like” icon, I noticed among the new “reactions” button that there were little angry icons. So I became curious and (stupidly?) asked why anyone would be angry about the idea of promoting Autism Awareness? Little did I know I was stepping into Alice’s little rabbit hole.
Apparently, there are a growing number of individuals, specifically within the Autistic community, that believe Autism Speaks does not necessarily “speak” for them. Among the very heated post were Autistic individuals and ASD families that said they were NOT going to Light it up blue for the day, that they were wearing “red for acceptance” or “gold for acceptance.” I felt like I was stepping into a pool of muddying waters. Below is what a anti-AS facebooker posted in the thread.
Perhaps this post might have swayed some individuals from donating to Autism Speaks. But, not me. In the early days of my son’s diagnosis, they were a source of immeasurable help. I was able to learn about Autism and what to expect, current medical information , gain access to therapists and support groups in my area, and so much more.
Addressing the pie chart, I find it commendable that a good majority of their funding goes towards research, Awareness campaigns, lobbying, and fundraising! These are their focus areas. In fact, their mission statement reads:
At Autism Speaks, our goal is to change the future for all who struggle with an autism spectrum disorder.
We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism. We strive to raise public awareness about autism and its effects on individuals, families, and society: and we work to bring hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.
Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.
If you’re looking for a charity that is primarily focused on financially supporting ASD families and individuals, donate there! However, I’m more interested in the biomedical research that AS helps fund.
Many of the individuals who spoke up against Autism Speak’s LIUB post were autistic individuals that were adamant that Autistics don’t need awareness, they need acceptance. Below is the Merriam-Webster Dictionary’s definition of aware:
awareadjective \ə-ˈwer\Popularity: Top 30% of words
Simple Definition of aware
: knowing that something (such as a situation, condition, or problem) exists
: feeling, experiencing, or noticing something (such as a sound, sensation, or emotion)
: knowing and understanding a lot about what is happening in the world or around you
Me being me, I immediately jumped into a debate. Do I want people to accept my sons for who they are, despite their differences and quirks? Yes! Absolutely! But in order for them to do that, I think it’s important that they become aware of their condition.
This is a situation I envision that isn’t so far-fetched: My son is playing a game of basketball during gym at school. He has the ball. The opposing team tries to take the ball from him. He doesn’t understand that that is the object of the game and misunderstands their intentions as being unfriendly teasing (this actually happened). He gets upset, maybe a bit angry, and starts a physical altercation with the next boy that “guards him” or tries to take the ball away from him. I imagine the other little boy isn’t going to be so
“accepting” of my son. However, if the other boy went into the situation being aware of his Autism and how it affects him, he might approach things differently or react differently.
There’s not a neon sign over my son’s head reading, “Autistic.” And, every autistic is different. There’s no mold. But, there are classic signs that people can see if they are willing to look for them. But that means being aware. So, as long as I’m alive, I’ll push for Autism Awareness. And, I’ll support Autism Speaks. Because the 33% of their budget that goes towards Media and Awareness campaigns, might actually bring about acceptance one day.