It’s that time of year again: Autism Awareness Month is upon us. I initially thought I was going to focus on why I DON’T think people should wear blue, but I recently had an epiphany and have rethought my position. Adam Grant would be proud of this growth, I think. (Don’t know Adam Grant? You should.)
I have typically taken the stance that wearing blue doesn’t do anything for the autism community. Wearing blue doesn’t teach others about how autism presents itself differently in every single person who has this diagnosis. It doesn’t educate people about what autism is or isn’t.
My distaste for wearing blue is mostly about the organization that created the Light It Up Blue movement. Autism Speaks was founded with the intent to “cure” autism. If you know anything about autism, you know there is no cure. That should never be the goal, as it’s unattainable. Stating or implying that a person can be cured from the way their brain works…that’s not great. It’s harmful. It creates false hope for families who are new to the autism roller coaster — and worse, it sends the message to autistic people that something about them needs fixing. People with autism don’t need to be “fixed.” Rather, the world needs to learn how to accept and include neurodiverse individuals.
Secondly, I dislike the blue campaign because it promotes the stereotype that only boys have autism. While it’s true that boys are more commonly diagnosed with ASD, this disorder does in fact affect girls. Many girls simply don’t exhibit the same behaviors people commonly associate with autism indicators. Girls aren’t as likely to line things up, for example, and tend to be better with social skills.
Thirdly, and I think most importantly, many autistic adults do not like Autism Speaks or their Light It Up Blue campaign. Their reasons include those I’ve listed above, but there’s another big reason: Autism Speaks hasn’t traditionally sought input from the autistic community. If you look up #actuallyautistic, you’ll find loads of information about how autistic adults tend to be overlooked and not included in conversations about autism. Which is why many promote wearing red instead, and they prefer the name Autism Acceptance Month. It’s not enough to just be aware of autism; we need to accept autistic individuals and include them. Those of us who are parents of an autistic child need to listen to autistic adults. Our children will become autistic adults one day; surely we want others to listen to their perspectives about how their own brains work?
You may be thinking, “Where’s the change of opinion here? She seems solidly in the anti-blue camp.” It’s true, I still don’t like it. But I’ve been thinking long and hard about this. Why do I care if other people choose to wear blue? Is it partly related to my frustration with the constant dress up days at school? Probably. (As I’m writing this, it’s Read Across America week, so my kids’ school has had a different theme for each day. Apparently, I need to make sure my kids have clothing in every color of the rainbow, plus tie-dye and camouflage to make it through the school year. But that’s a rant for another blog post.)
They recently wore green for cerebral palsy. Do those elementary students know anything more about CP because they wore green? NOPE. A notice about an upcoming “dress down for Down Syndrome” day made me gasp in horror, because the name itself sounded so offensive. Then I did a little research and learned this is actually a fundraiser from the Down Syndrome Association. If this group promotes it, who am I to decide it’s offensive? (But again, do kids learn anything about Down Syndrome by wearing pajamas to school? I’m going to say no.)
I recently read a post by Eileen Lamb that resonated with me. (Eileen Lamb is an autistic adult who has two children with autism. One is verbal; the other is not. She has a large following, but also a lot of autistic adults vehemently and vocally disagree with some of her views.)
You know what’s NOT kind or respectful? My previous knee-jerk reaction of scoffing at wearing blue. Who am I to say my preference is better? It is simply one person’s response to a complicated and emotionally-charged topic. Does that make it right? Or wrong? No.
I choose not to disclose my child’s diagnosis to people I’ve just met. I don’t think it’s their business why my child acts a certain way. I used to feel like I had to explain, justify, or defend what some might consider to be odd behavior. I sometimes still fight an internal battle to refrain from telling random people about my child’s autism diagnosis. It’s part of who he is, yes, but it doesn’t define him. And people don’t need to know how his brain works to be kind. We should just strive to be kind to everyone because we have no idea what is going on in their lives. Does that mean it’s wrong for another person to share their child’s diagnosis upon meeting a new person? No. It’s just a different approach. Not right or wrong; just different.
So I’m going to approach this April differently. I don’t know why wearing blue matters to another person. Maybe it provides comfort to see others donning this color. Maybe they view autism as a gift that deserves highlighting. Maybe they feel helpless and alone, but wearing blue makes them feel connected and part of a community. I don’t know. I do know they don’t owe me an explanation. Nobody has to defend or explain why they do or do not like blue, puzzle pieces, infinity symbols, Autism Speaks, Actually Autistic, Eileen Lamb, or any other autism-related individual or group. That’s not my business. My business is to do the very things I want for my own child and all people with autism: accept that there is no one right way to do things, respect and welcome different perspectives, listen to and learn from those who have autism, and above all else: BE KIND.
Thank you, Eileen Lamb, for nudging me to open my mind and rethink my position on a topic that used to get me all worked up and angry. That anger did no good for anyone. Not for myself, not for my child with autism, and not for a single member of the autism community.
So wear your blue or red proudly. Or don’t. Not my business.
But I really do wish schools would consider cutting back on those dang dress-up days.