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Autism Awareness Shouldn’t Be a Boys’ Club

By Toni Brannagan

There are most definitely exceptions to this rule, but I have a feeling that if you type “light it up blue” into your Facebook search bar you'll notice a few things: 1. Many of the posts are written by parents; 2. Those parents probably have sons.

According to the CDC, 1 in 68 American children has been diagnosed with autism spectrum disorder (ASD) – with a ratio of 1 girl for every 4.5 boys.

That can’t be accurate, right?

Some attribute this level of disparity to gender-based diagnostic processes; more specifically, diagnostic processes based almost solely on boys. The implicit biases present in the medical community are being increasingly highlighted, including a recent article by The New York Times meticulously detailing the alarming mortality rate of black mothers and babies in the United States. Another example you’ve probably/unfortunately heard of is how women have been straight up sent home from emergency rooms because medical professionals are more likely to disregard heart attack symptoms in younger female patients than they are in younger men.

Similarly, recent studies have shown that the way ASD is diagnosed strongly favors the male experience, which usually leads to the missed opportunity of early intervention in the cases of young women dubbed “the lost generation.”

Here at THINX, we get a lot of feedback from people who have been diagnosed as being on the spectrum and use our undies to combat sensory issues with pads and tampons. It definitely makes you wonder how many young girls going undiagnosed have to suffer through those discomforts...

Girls are from Venus

Even when girls are correctly diagnosed, more often than not it’s in late adolescence, rather than when many boys on the spectrum are identified, which can be as early as infancy. Kaylene George, a 25-year-old autism self-advocate who runs the blog Autistic Mama, only learned she was autistic when her son was diagnosed himself. She has since found it incredibly difficult to access medical professionals who understand autism in women *and* in adults, in general.  

Abbey Vire, a 21-year-old student on the spectrum, was diagnosed when she was around 16, while her older brother was diagnosed with Asperger’s when he was 10. His diagnosis was based on factors like recognizing social cues, while her behavior was chalked up to shyness.

“There’s a large portion of the female population that goes undiagnosed and has their struggles dismissed as quirkiness, emotional instability, PMS, etc,” Abbey observes, citing her own experiences with social anxiety while being told she would simply grow out of it.

The world already feels like it’s going to end when you’re a teenage girl, whether you failed Chemistry or committed to blunt bangs you really should have taken a second to think about before chopping in the middle of the night (I know for a fact I’m not the only one that did this… right?), and especially when your body starts doing fun things like bleeding for a week straight. While we have a name to put to menstruation, and as a result are able to manage them properly, imagine not having an explanation for the way your body is reacting to what is supposed to be a natural process.

“When I was a teenager, I didn't know I was autistic. I only knew that I was ‘weird.’ I often got distracted during my period and wouldn't change products in time, so I had leaks a lot. It was terribly embarrassing, so I started to use a tampon and a pad all day, every day,” Kaylene shares, adding that she advises autistic girls to set up notifications on their phones to help with period management.

Abbey also notes that ASD combined with PMS can make it even more difficult to deal with social situations. “I’m more prone to panic attacks while on my period. About a month or so ago, I went out to lunch with my family and had a panic attack in the middle of a Chili’s. I think what triggered it was the thought of being asked what I wanted to eat. It can be something that small, something that seems so insignificant to other people. During any other week of the month, I could push through it and order my food just fine. But for people with ASD, something tiny like that can be terrifying, especially when you have even less control over your emotions. Imagine having to get on a stage and give a speech to a thousand people. Sometimes that’s what it feels like for me to make small talk with a stranger or order food in a restaurant. When you have ASD, dealing with emotions is a very different process. Your reactions may be irrational or inappropriate for the situation. You don’t always understand why you behave the way you do, which can be very frustrating.”

She recommends that young girls with ASD don’t beat themselves up over their reactions to things, whether that reaction is uncomfortable, awkward, or emotional. Quite frankly, that’s good advice for everyone to take — especially when it comes to figuring out how to get beyond the period taboo.

Ally Awareness

Autism Awareness Month is coming to a close, but beginning and ending awareness on any subject, in just one month, isn’t the way to make real change, is it? For one, all 12 months of the year, the voices of people who are actually on the spectrum should be centered. This seems like a no brainer, but like I mentioned earlier, a ton of conversations about autism begin and end with parenting. This is not to say parents shouldn’t be sharing their experiences, and obviously young children on the spectrum may not be able to advocate for themselves, but it’s worth noting that there are many examples of conversations with the undertone of autism being a problem to “fix” that are deeply harmful to the autistic community.

For example, in 2009, Autism Speaks released their Kendall Jenner Pepsi commercial equivalent – highlights from the transcript (the video has been since taken down) include blaming autism for breaking up marriages and comparisons to pediatric AIDS. More recently, Autism Speaks’ hashtag on Twitter, #AutismSpeaks10, was flooded with people on the spectrum vocalizing their distaste toward the organization’s messaging. Autism Speaks is the most widely known organization focused on autism, but when a literal list can be produced of dozens of articles about how Autism Speaks can be problematic, we should definitely be paying attention.

Of course, no one person represents any entire community, but to be good allies, we should be primarily listening to those people. Read up on identity-first language, and actually ask people what language they prefer you use. If they say the puzzle piece is offensive, listen.

Specifically, in place of Autism Speaks, Kaylene suggests supporting the Autistic Self-Advocacy Network (ASAN) in a blog post about being a better ally this month (but hopefully, every other month too!).

We’re proud to be allies to the autistic community, and when you want to be a good ally to *any* community, you should know how to listen – and own up when you make mistakes. Recently, Ace Ratcliff, a writer, artist, and disability justice activist reached out to educate us on how to do better.

“Within the disability community and the autism community (sometimes people count themselves as circles within the same Venn diagram, it just depends on the person), there’s been a strong movement towards identity-first language (IFL) versus person-first language (PFL). Most of us have made the transition because we realize that our identifies deeply define every moment of our experiences.

We cannot be separated from them, nor do we want to. The idea of IFL helps focus on the concept that our identities are integral to understand who we are and how we interact with the world. PFL is usually used by people who view autism/disability as something negative or unfortunate, something that we should/could be separated from, or something to be fixed.”

While Ace was kind enough to help us out, no one should ever be relying on the members of a community to educate them. Being a better ally means stepping up and doing the work.

Are you or anyone you know vocal autism self-advocates? Tag a friend to amplify their voice and share your stories with us in the comments!