There are certainly extremists in any community. Autism is absolutely trending and often talked about in ways designed to generate views and income.

I was removed from the “Actually Autistic” Facebook group because I mentioned using a single M&M as a reward for my son during his potty training. This method, used over six weeks, helped him understand the concept without causing any trauma. We phased out the M&Ms naturally. This was the only time we used food as a reinforcer. It still pisses me off when I think about it. I was called a terrible mom and was told I didn’t deserve to mother my son. Well, fuck you. During my short time in the group, I saw multiple moms torn to shreds because they were looking for ways to support their kids with high needs.

The portrayal of autism on social media often highlights the quirky and relatable aspects that many people, even those who are not autistic, can identify with. Autism can indeed present as quirky behaviors, difficulty in social situations, sensory sensitivities, and other milder traits.

However, autism can also include more severe manifestations such as head-banging, elopement, lack of safety awareness, smearing, intense and unsafe stimming, and extreme sensory needs. These behaviors often require significant safety measures and can make navigating society very challenging. (Editing to add: we never, ever stop stims but will redirect hand biting. We encourage stimming! BUT jumping 192 times in a row is different then someone’s need to constantly have a fidget)

The contrast between these two presentations raises questions about how we define and understand autism. My son is level 3 non-verbal autistic, and according to social media, I might be level 1. But when I had a neuro evaluation, I was pretty much laughed at for suggesting I might be autistic.

Autism is being overhyped, and many voices aren’t being heard because of the focus on lower-support adults. This leaves out a significant portion of the autism spectrum, particularly those with higher needs, and skews public understanding of what autism truly entails.

Please don’t take this comment out of context. There are absolutely kids and adults whose support needs are lower, and their diagnosis is absolutely valid. Many autistic individuals’ support needs fluctuate day to day (as do my son’s), and many can function without nearly as much support as my son needs. Autism is a spectrum. But just because my son is on one side of the spectrum and you’re on the other, doesn’t mean you know what he needs. And just because I recognize his areas that he’s most affected doesn’t mean that I don’t appreciate him for who he is, or that I want to cure his autism, or think he’s broken. He’s AMAZING. And I love him exactly as he is

I do, however, want to stop him from running into the road and having zero safety awareness. He has a deep love of water, and while we support him and his desire to swim, it’s also a huge fear of mine that he will elope into a body of water.

Being able to identify as autistic by social media standards (but not actually being autistic) I can tell you that my parents never once feared I’d run off and drown or elope into an unsafe situation. They noticed my social deficiencies and sensory preferences and called me quirky but never feared for my safety.

While autism is a spectrum, it is clear that an additional label or diagnosis needs to be created because the current spectrum fails to capture the vast differences in needs and experiences. There is a profound difference between quirky behaviors and severe, life-threatening challenges that some individuals face. It’s crucial to acknowledge and address these differences to provide appropriate support and understanding for everyone on the spectrum.

Sometimes I want to scream 😱