To light it up blue or not. That is the question.
The divide in the autism community is never stronger than during Autism Awareness Month. It’s depressing.
The most known effort during Autism Awareness Month is “Light It Up Blue” which is a campaign headed by Autism Speaks. Nothing divides a room of people with autism and their families like that particular organization.
High-functioning people with autism will say that Autism Speaks does not speak for them because they highlight the devastating stats that come with autism. And they portray individuals with autism as drains to their families. And that they want to find a cure for autism and these individuals are offended that someone wants to “cure” them. They like who they are.
Parents of low-functioning children with autism will say that Autism Speaks is not putting enough resources into researching the causes of autism and ways to not necessarily “cure” their child, but at least ways to HELP their child reach their highest potential.
Most, if they look into the tax records, will agree that Autism Speaks is greedy. From their own IRS 990 form in 2013 this is the information you would gather:
Office expense: $4,723,804
Travel expense: $1,341,114
Grants and other assistance to individuals in USA: $550,754
It’s hard to want to support a nonprofit organization that raises over $63 million in contributions and only gives back $550 thousand in grants and assistance to the community.
Four years ago my oldest son (then 8 years old) asked me, “Why blue, Mom? Isn’t autism all colors?”. Very inquisitive question from a little boy and it made me think a lot about my involvement with the Light It Up Blue campaign.
Here’s the thing. Despite not agreeing with Autism Speaks. Despite not giving any of my money to them (I prefer local organizations, Generation Rescue, and the National Autism Association). I still don’t hate the blue campaign.
Because it gets attention. Because people are becoming aware. People are becoming accepting. They are advocating.
Five years ago my son’s school didn’t even have an autism program.
This past week the entire school wore blue, except for Brian who decided to wear a “Team Brian” shirt. My child was celebrated. His regular-ed classroom full of typical fourth-graders did a rousing round of “Happy & You Know It” because they knew that was Brian’s favorite song. Even though they’re well past the age of singing songs at “circle time”, they were happy and stomping their feet and shouting “Hooray!”. My son’s teacher gave him a gift of animals and a gift of candy to the rest of our family. We were seen and we were loved and accepted. If the Light It Up Blue campaign helped in any way to make all of those people aware and bring them all together to celebrate my son and the others like him, than I have to say “Thank you”.
There’s this yin and yang to autism. I don’t want to celebrate my son’s autism. I don’t like that autism makes him hurt himself, has developed into this insane OCD-tapping pattern, that makes it so he can’t perform self-help skills by himself, that he can’t talk, that he is crying and I don’t know what is wrong so I can’t help him, that it puts him at a higher risk of eloping, drowning, and being abused. I don’t like that I have to worry about who will care for him after I’m gone. I don’t like autism.
But I want my son to be accepted and loved and celebrated and seen for the amazing person HE is. I want people to see underneath autism, that he has a great sense of humor, that he is empathetic, that he loves truly and honestly, that he is forgiving, that he wants friends, that he is bright and has so much to offer, and he has the purest soul.
I want the PEOPLE with autism to be accepted and loved. I want more research, I want money being put back into the community to help these individuals. I want more adult services, I want more respite care, I want specialized help to be covered by insurance (yes, even after they are 10 years old!). I want specialized childcare to exist at rates that won’t bankrupt a family. I want acts that will financially help a parent that needs to stay home with their child because there is no other services available to them! I want autism programs to be abundant in public schools so the child can thrive in the environment he needs but still be included (and I am thankful every single day that my son has one of those!!).
If a “Light It Up Blue” campaign changes his school environment in just a short few years then it’s doing something right. So we’ll appreciate it and we’ll be thankful that it’s helping our son be accepted and it’s raising awareness. Honestly, seeing how happy my son was on Thursday and seeing the pictures and the videos from the day, moved me to tears. And I’m forever grateful that he is where he is. We are blessed to have the school environment that we do.
Still, we’ll keep wearing our “Team Brian” shirts to spread awareness and Autism Speaks won’t be seeing a single penny from this household.