Society & Politics

Why I Will Not Light It Up Blue for Autism Awareness, and You Shouldn't Either

Why I Will Not Light It Up Blue for Autism Awareness, and You Shouldn't Either

April, for anyone not aware, is autism awareness month. Every year, people are encouraged to buy blue light bulbs for their front porch. Landmarks, tourist attractions, and government buildings are lit up blue. People wear blue shirts with puzzle pieces and attach puzzle piece magnetic ribbon decals to their cars. And then there are the ads. They talk about how autism is on the rise, how it's "stealing our children," and how there is hope.

My hope is that all this autism awareness talk ends. My hope is to never see a blue porch light or a courthouse or bridge or statue bathed in blue light. My hope is that people will stop supporting (perhaps unknowingly) the organization behind all of this. My hope, as an autistic person, is that our voices will he heard… but first they have to stop being drowned out by those who claim to speak for us.

The largest organization associated with autism and autism awareness, and the source of the 'Light It Up Blue" campaign, is Autism Speaks. There is not a single autistic person in their leadership. None of the group's executives, nobody on any of their advisory committees, not anyone associated with Autism Speaks in an official capacity is autistic. How can this organization claim to speak for us?

They have issued numerous public statements calling for understanding and compassion… for parent who have just had enough and murdered their autistic children. Last year they ran an ad where the mother of an autistic child talked about how hard it was, and said she sometimes thought about killing herself, but she couldn't bring herself to deprive her child of a mother-- she was not referring to her autistic child but to her 'normal' child. This same organization that supports filicide also spends a lot of money on autism research… specifically for finding a genetic marker for autism. The only foreseeable benefits of such a thing would be for genetic screening for autism. Because expectant parents should have the option to abort people like me. This is the position of the 'charity' that claims to represent me and support people like me.

And why a blue light? Because 4 out of 5 kids diagnosed with autism are male, and blue is associated with boys. The reality is there are many undiagnosed or self-diagnosed autistic women… maybe not as many as there are men, but far more autistic people are female than just 1 in 5. They are often misdiagnosed as Bipolar or Borderline, sometimes OCD or ADHD. Many struggle for years with these diagnoses, knowing that it doesn’t fit but unable to get anyone to listen to them. Many women go undiagnosed until they have a child diagnosed and point out to their doctor that they have the same behaviors. There is rampant sexism in the diagnostic criteria, as well as among those that make the diagnoses. Autistic traits sometimes manifest differently in females, but the main reason they get diagnosed with other 'disorders' is the difference in the autistic behaviors compared to expected 'female' behavior. Lighting it up blue reinforces the connection between autism and boys, and perpetuates the misconceptions that cause hundreds of thousands of women to go undiagnosed… to live their lives knowing they are not like other people and not knowing why. I spent the first 30 years of my life undiagnosed because Asperger's didn't exist as a diagnosis until I was already old enough to drive. I know firsthand the hell that many women are still being subjected to because of the association of autism with maleness that the Light It Up Blue campaign perpetuates.

And what about the rest of the year? Okay, sure; let's talk about autism, let's be aware… for 30 days… then what? For me, there are 11 more 'autism awareness' months in the year. There are days like June 18, Autism Pride day. And there are days like March 20… the Day of Mourning, to remember those with autism, ADHD, Down's syndrome or some other form of neurodivergence who have been murdered by their parents or caregivers… the kinds of acts Autism Speaks condones.

Don't get me wrong. I am not against talking about autism. I do it a lot, actually. I am not against celebrating this part of who I am; nor am I against neurotypical allies and advocates showing their support. Many of us in the autistic community (yes, we have one) choose rather to Light It Up Gold, for autistic pride (the first two letters it the word 'autism', Au, is the chemical symbol for gold) or Light It Up Red, for empathy and understanding. What I am against is the organization that started-- and still benefits financially from-- this whole 'light it up blue' campaign, an organization that has spread misinformation and lies, that wants to 'cure' us, that strives to silence us or at least drown out our voices. I am against an organization that claims to speak for us but does not listen to us. I am against the research they do and the ends they would put it to. I am against everything about Autism Speaks. In my view, and the view of many autistic people, it is a hate group.

So if you want to show your support for autistic people, instead of lighting it up blue, light it up gold or red as mentioned previously. Or perhaps donate the $2 or $3 you would spend on a light bulb to ASAN, the Autistic Self Advocacy Network, an institution run by autistic people that actually advocates for autistic people. Or read books, article, and blogs about autism that are written by actually autistic people. Or simply ask questions about autism; I will be happy to answer them.

Why I Will Not Light It Up Blue for Autism Awareness, and You Shouldn't Either
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