Describing a new color. A vital midlife ASD revelation leads to a path of frustration.

Do you know anyone with color-blindness? Have you ever spoken with them about color or the colors that they can see? How do you speak with them about colors they aren’t able to see like you can? Can you imagine what it must be like to know that millions of people all over the world can perceive something you’re unable to see?

I am hoping that, like me, you are now curious about this week’s topic, because it could honestly either be about how ASD individuals can’t perceive how they come across, or that Autistic people simply do not have the necessary words to describe our lives and what an Autism diagnosis means to us. If your money (note: this blog doesn’t encourage gambling unless it’s for charity) was on the second topic, pat yourself on the back and maybe send your charity a donation to celebrate your mastery of intellect or luck.

Why I bring this up today is that I’m slowly learning, with deep sadness, that the words to describe being Autistic really don’t exist. Dig deep and tell me, honestly, could you describe a new color? What if it fell completely outside of the color wheel? Obviously, this hasn’t happened and if it did, it would radically change our understanding of human perception. There aren’t many things in this world without context — even things which are entirely conceptual. Accessible context is required to share understanding. There’s currently no way to show someone a new color. Rather, you would need to enhance, replace, or reshape the cones in their retinas.

Many issues of colorblindedness stem from an actual lack of a type of cone or cones within the retina. What I’m saying here is that trying to describe experiencing Autism, without the ability to change someone’s own physiology, isn’t quite possible. It’s not that the words escape us. Rather, the “words” don’t exist; just as one’s inability to perceive color has similar limitations. You just can’t see what you weren’t built to see. Don’t believe me? Just go check out that xray band on that double rainbow outside.

I’m certain that parents and friends, partners and colleagues may think the words that they offer are helpful, and they can be, but please know that we’ve thought through the discussions and conversations and have had many. In our mind, we know exactly how to talk about Autism, but because the words are nonexistent, we sometimes struggle to clearly articulate our experience. Nothing in that moment could be more demeaning and upsetting to an Autistic Person than a well-intended Allistic person trying to “provide clarity” to what we’re trying to say. So, please allow me to offer you the clarity you may need: Stop. Just stop it now.

I was 46 years old when I discovered that Autism was my super power. It allows me to focus at such a detailed and granular level with bottom-up processing that I can think ahead of the FAQ’s of the world. Additionally, I have pretty amazing hearing and feel I relate well to animals. The point being, I LIKE myself. However, none of these descriptors help anyone really understand the life of someone with this neurodivergence. Early I mentioned a deep sadness, and I think it’s a similar sadness to someone who realizes that directly because of who they are, they won’t be accepted. You’ll find other groups have similar challenges, from the transgender community to those with invisible disabilities, such as apraxia, Tourette's Syndrome, and others. The commonality across these groups is lacking words due to an absence of context.

So, what do we do? First, start by trying to describe to someone a new color. Talk with them. Why can’t you have this discussion in a reasonable way? It’s entirely because you can’t see that color either. Now, find someone who can! Once you engage Autistic People in their own discussions, you’ll have a contextual guide! This is what is severely lacking across healthcare, education, government, and even therapy. Ask us, train us, and then allow us to guide you how to speak about, think about, and really understand us.

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