A Sibling's Perspective on Autism Acceptance Month

Autism is something that has affected me my entire life. Growing up with an autistic older sister was something I often tried to hide as a kid. I was shamed for having a difference in my family, and I would stay up late at night wishing I had a "normal" home life. When I was a kid, I never had an Autism Acceptance Month to celebrate. Teachers didn't celebrate neurodiversity at school. Nobody was sharing their support on Facebook. I always loved my sister, but I kept waiting for the day she'd be more like me.

When I was younger, I wouldn't be caught dead talking about this. Kids at school made fun of my sister (and in turn, me). Why would I draw attention to it? I had no one to relate to. You see, boys are more likely to be diagnosed with autism than girls. I don't have a statistic for this, but from my experience I've met more people with a younger autistic sibling than an older one. I didn't think anyone understood, but I don't think anyone ever can unless I start talking about it. Statistically, I am already in a unique position. And as a teacher that preaches inclusivity and kindness in my classroom, it's time I step up and be the representation I needed when I was younger.

Recently, I submitted an essay on this topic to a contest. The essay had to be 250 words or less. I struggled to condense my paper down. How could I tell a 24 year long story in just 250 words? 250 pages seems more reasonable. Truly, I don't think this one blog post can begin to sum up the positive impact my sister has had on my life, but this is my starting point.

For now, I want to share what has been weighing on my heart for years. If you really want to support the Autistic Community, I want you to start looking at real life stories, and not just the ones your teachers tell you about in class. I want you to hear my voice (but more importantly, the voices of the people I am supporting here). Here's what I want you to think about as we enter this Autism Acceptance Month...

Autism has been hard on my family, but that doesn't mean I love my sister any less. If anything, the hardest part of having an autistic older sister is the way society has treated her and the rest of my family. Having a child with special needs can be draining, but "finding a cure" or trying to rewire someone's brain is disrespectful and inhumane. All of the nonsense that Autism Speaks (a HATEFUL organization, by the way) has put out is incredibly offensive. Sure, there have been struggles, but instead of trying to change someone, find out what you can do to help them and show them kindness. ACCEPT them.

It's really hard for girls. I'm going to be bold here and say that girls are mean. We judge each other so harshly for the clothes we wear, the way we do our hair, the way we post on social media. I'm guilty of it, too, but it's heartbreaking to have seen my sister excluded from "girl stuff" throughout her life. From my experience, I see girls sticking up for the "weird boy" that likes video games, but then turn around and make fun of "annoying girl" in their class. There is no actual way to know if there are more autistic girls than boys. In fact, this stigma that less autistic girls exist can lead to mis-diagnoses. There could be millions of autistic girls out there that aren't even aware they're autistic. So girls (of any age), I'm asking you to include the girl in your social circle that you might not usually. Even if you think her posts are a little quirky, give them a like. Invite her to sit with you at lunch. Help if her she needs someone to practice running her lines with at rehearsal. The world is already stacked against girls, especially autistic girls. Make it a little easier for them.

Also, the "light it up blue" movement not only comes from Autism Speaks, but the color blue was chosen because of the male dominance in autism diagnoses. Just some food for thought here...

Stop telling me Frozen is overrated. You may be sick of hearing "Let it Go", but I will never get tired of this movie. Frozen is the first time I saw my relationship with my sister represented. My sister and I agree that Elsa could be autistic. She has to work extra hard to manage her emotions, and sometimes she just can't. Her little sister, Anna, loves her unconditionally, but can't understand why she isolates herself. I cried the first time I watched the scene where Anna just wants her sister to come play, but Elsa can't. This looks very much like my childhood, and the celebrated bond between Elsa and Anna has helped me accept and love my relationship with my sister.

You need to listen to actual autistic people. I remember how badly my body was shaking when I saw sia (a disgraced musician) tweeting hatred towards autistic girls that criticized her for her offensive movie about autism. If you want to serve this population, you need to LISTEN to this population. Stop sharing Autism Speaks posts on Facebook. Consider using the infinity symbol instead of the puzzle piece. Stop acting like you support a community that you won't even engage in conversation with.

Stop correcting me on my terminology. It's widely accepted in the education community that we use person first language (ie. it's acceptable to say a "person with a wheelchair" instead of a "wheelchair bound person). However, this is not true with autism. I've heard many autistic people describe the phrase "having autism" or "with autism" as making it sound like a disease. It's not; it's an identity, and it should be celebrated as such. Of course, if someone would prefer for themselves to be referred to as a "person with autism", DO SO! Just like pronouns, we need to respect someone's wishes. I purposely used this language throughout this post to respect my sister's wishes. I've had classmates tell me to stop referring to my own sister as autistic, which is incredibly offensive. I don't know everything, but clearly you don't, either. Know that both are okay when the person is okay with it, and trust that someone's family has checked their preferences.

Vaccines don't cause autism. Hopefully you already knew this, but do you understand why? Years ago, a doctor (who's science was later debunked) published a study showing a correlation between autism diagnoses and vaccines received in childhood. The correlation showed that more children were being diagnoses with autism at the same time children were receiving more vaccines. However, it is likely this was a coincidence, as advances in science have led to both a better understanding of autism (and naturally more diagnosed people) as well as more vaccines. There is no way to know if before this time there were actually less autistic people (as thousands likely went undiagnosed). Additionally, the researcher failed to show any connection, any causation, between the two. It's important to understand this so that you can help educate others and stop spreading the false narrative that vaccines cause autism. It's also important to note how deeply hurtful it is to tell someone that you'd rather a child get a deadly virus than be autistic.

I have the privilege, not the burden, of watching my autistic sister grow up. The last thing I want you to remember is that autistic people can do anything anyone else can, they just might need extra support. My sister is now a lawyer, graduated from a top tier law school and passed the BAR exam with flying colors. This is something most neurotypical people can only dream of, and she did it. She will be the first person to tell you that without the support system she's had since she was a child, she never would have been able to achieve this. So many autistic people go without support, which is why we need to focus our energy and resource on helping this population.

While I offer a unique and important perspective, no one's voice is more important than the voices of the autistic community. Not sure where to look? Here are some resources:

The Autistic Self Advocacy Network: https://www.facebook.com/AutisticAdvocacy

Autistic Women and Nonbinary Network: https://www.facebook.com/awnnetwork.org/

Paige Layle: https://www.tiktok.com/@paigelayle?lang=en