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Beyond Labels: Embracing Authenticity in the Special Needs Community

I have a love-hate relationship with labels.

On the one hand we really need them.

On the other, they are terribly limiting.

After Jack was diagnosed and they were giving us his "label" I cried. I sat in that evaluation room with the psychologists and my husband at the time and cried. I'm pretty sure I mentioned something about how Jack liked to be touched so he couldn't have autism.

Oh how little I knew about anything.

And initially I hated that word. Autism.

It was a dirty word. The A word. Eveytime I heard it in those first few months I would see red. I'm a passionate person. I have big feelings. I HATED that word. It was months before I could hear it and not get angry.

Part of that came from an amazing woman at our church. I was sharing about Jack's diagnosis. I am sure I cried there too. I shared my fear, my worry. Both for my son and for me and my family. Would we be ok? How could this happen? Somewhere in that conversation I said the words, "Jack's autistic..."

She looked me dead in the eye, reached for my hand and said, "No Jennie, Jack has autism. He isn't autistic, he's Jack."

Those words opened up a world for me. And my hope in this blog post I can share a little of that with you now. Especially if you are struggling with "accepting" your childs label. Whatever it may be.

While I hated the word autism intially I realized quickly that it was neccessary. See all language is labels. All of it. It is the only way we can communicate. Even if we aren't communicating verbally, communication is the exchange of meaning between two or more people using some kind of label. In terms of language we have evolved to agree upon what the general meaning of a word (label) is. If I say chair, and you understand English, you know basically what I'm talking about. This is a critical point that is often forgotten about. We all know it's true, but we don't often remember it.

The other part about labels that we can't ignore is that we WANT them, provided it's a label of our choosing. People every where purposely look for labels to identify themselves so that they feel seen and can find people with similar labels to connect to...we all do this. It's not inherintely bad or wrong. The way our brains work make labels and indeed any grouping of similar information an adaptive behavior. When we taste a red berry and get sick our brains create a connection better red berries and sickness, so we won't die eating something we don't know.

The problem is that when we do this we miss out on raspberries, and cherries (my personal favorite) and that is sad, because they are both amazing.

We also don't always remember how often those labels are still individual depsite how much we agree on meaning. Have you been in a relationship before? Ever have a misunderstanding about an expectation? Yeah...that's different understanding of a label. Don't believe me...reach out. I'll convince you, I promise.

So while they are critical when it comes to communicating needs and helping us out in brain processing power, we also must respect that variation exists for people when a label is used AND they aren't always accurate.

And we can take it a step further and realize that a single label is woefully incomplete to commincation completely about anything as complex as an individual. I mean, yes I'm a woman...but that isn't ALL I am. And no combination of labels will fully express that. Hence the limit in using labels.

So what do we do? I mean with the label of autism my son gets access to services and supports that he needs to live a fulfilling and complete, INDEPENDENT life. But as soon as I say autism the mind creates meaning about what that person must be like. If you have been around the autism community for any length of time then you have probably heard the phrase; 'if you've met one person with autism, you've met one person with autism'. It's to remind us that autism is a spectrum and that people are more than just that label.

And of course this goes way beyond special needs or autism. Labels can create issues in every area of our lives. Because any label immediately creates an identity and that is never a complete picture of a person. Race, religion, sexual orientation...all of these labels are sometimes used to define who a person is. And anytime that happens problems usually occur.

If I tell you that my son is a 16 year old white, male, non-verbal person with autism you're brain creates an identity around that about who he is. Anything that I share with you about him that is not alighned with your view on what those labels means becomes difficult for you to believe in and engage with. Ergo the reason we make assumptions about people based on their labels, and why we shouldn't.

This is why I celebrate what my son's autism has taught me about personal experience, perception and empathy. Real empathy (thank you Brene). I also believe that a tremendous amount of label questioning has been spurred by the LGBTQ+ community. And while I am only loosing related to that community through a few family ties and friends, I do view that community as instrumental in forcing our societies to redefine labels. Or at the very least, have us question what that label really means.

All of those thoughts leads me to what I believe is the only real productive way to work with labels. Aknowledement of thier limits.

We can't get rid of labels and in truth that isn't the goal. It wouldn't be helpful, remember, we need them to communicate. But we can remember that our brains were designed to simplify things by using labels to group things together and we might not be correct in our assumptions when we do that. I say frequently in our house, the only safe assumption is that you are wrong. When we can do that we have the best chance to not offend or hurt someone's feelings. Because the goal is to actually meet people where they are.

This to me is the art of inclusion and diversity. It's not one size fits all (I loved the post picture). That's not real. It's what does each person need to actualize their potential? We don't need or even want the same things, no matter what our labels might say about us. And that is the point of this post. A challenge really. Not to treat others as you want to be treated (golden rule) but to treat people how THEY want to be treated (platnium rule). When you see someone just remember you are making assumptions about them. From how they dress, to how they talk, to everything. So just know you are doing it and then make an effort to actually get to know them. Instead of relying on that brain of yours to assume anything about the person you are engaging with.

I can tell you as a mother of a child with a special need, please do this for my son. Please take the time to know him, see him for how he is completely. Not just that fucking word autism that we have to use in order to communicate needs and recieve services.

He's not autistic. He's Jack.

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