Autism Answer: Autistic Communication - a conversation

 Originally published in  The Loop

 

Mom & Dar

 Communication

 The exchange of thoughts, messages, or information, as by speech, signals, writing, or behavior.

My mom has been teaching the value of believing in, listening to, and raising the bar for people my entire life. I am the oldest of her eight children and admit, it didn't come natural to me, this believing beyond appearances thing.

But in our home we were not allowed to ignore ideas that might uncage people. Specifically, in my youth, my brothers.

So I pretended. I pretended I believed my four adopted brothers were as capable and "like us" as my mom clearly wanted them to be. I pretended, but with mom's consistent guidance it wasn't too long before pretending shifted. Not only for me, but for my brothers and others as well.

My brother, Dar, who is most severely impacted by autism, was the most challenging for most of us to recognize as relatable. Sure, he was handsome, but the jumping, rocking, stimming - none of it seemed to be for reasons anyone could fathom.

And goodness knew he wasn't telling us.

Or, was he?

Mom insisted he was. She listened to his habits, his sounds, his reactions, his motions... she listened with her eyes, her touch, her ears, her heart. She asked him to speak, to type, to show us what he wanted to say...

Years and years of this, and as a family we all grew to understand Dar better. His speech, though, we understand least of all. Mom understands the words he says better than anyone else, yet still she mostly misunderstands or invents based on likelihoods.

As a brain and behavior expert who works with families all around the world, mom says this is common. This misunderstanding and assuming the words of our loved ones with speech issues.

There is so much value in knowing the speaker who is hard to understand is saying something, is worth working to hear and help. Just that belief alone makes a difference and can help us hear each other better.

But more is needed. We want more than what the belief can do - we want to move into solutions that take us farther.

Mom and Dar are working on that.

In the meantime, please enjoy the short video below of my brother, Dar, answering mom's questions with patience while mom misunderstands a lot. It was only during the playback that mom realized what Dar had actually been saying and Dar was able to confirm. (the captions are for those of us who are unsure of his words)

 

 

 

As we close out Autism Awareness Month, I encourage you to enjoy all the videos in my mom's Autism On The Road series. 

As my mom and brother live a nomadic lifestyle (in their RV, in hotels, invited to stay with family and friends around the world - from California to Montreal to Texas to Paris to Lebanon to Manitoba... a few months from now they'll be in Australia) their intentions have been largely to teach and to learn. As an autistic man my brother tends to inspire questions and reactions, which he and mom like to address with comfort, clarity, and kindness. 

Also, as an autistic man living in a variety of spaces, my brother necessarily needs and wants to learn new environmental skills. Food, toilets, and other expectations and availabilities shift and change, often drastically.  By spending the time closely with mom, they learn how to handle these things together. 

Lately, a big focus has been on communication. Communication of all sorts but, in particular, Dar is focusing on speech. When he watches the videos he's surprised by how unclear his language is. When mom watches them, she's surprised by how much of his language she had misunderstood.  

Together they watch them and Dar helps mom understand. Captions are added and the videos are shared.

They are the most recent (and shortest) videos on the Autism On The Road Playlist, and I recommend them. Of course, I also recommend the entire series! 

Follow this link to view the playlist: Autism On The Road  

 Hugs, smiles, and love!!

 Tsara Shelton (X.com)

Autism Answer: Communication is Hard But We Can Practice Clarity and Meaning What We Say

 

Pencil poised ready to write

Communication is hard. Verbal, non-verbal, written, performed, painted, or otherwise portrayed. English, French, doesn't matter. It's all hard. 

 

As a writer I used to feel as though I'd failed when something I wrote was misunderstood. Tens of people would understand*, and then one person wouldn't, and I'd feel I'd failed. I hadn't peaked as a communicator yet.

 

 *I was tempted to write "hundreds of people would understand" but let's be honest, I never had hundreds of people reacting openly to my writing. That's okay! It's more manageable this way!

 

How silly of me! Pay attention for any amount of time to the world around us and we see communication is always imperfect, even when done perfectly. Did I think I had some magical power of writing that could transcend all others? <--- no, but I've wished it.

 

All of our readers, listeners, neighbors, family and friends, are engaged in their own interpretations based on experiences, level of understanding or intelligence, specific interests in the moment, mood, prejudices, agendas. We are, they are, the world is. 

 

It is one of the wonderful wonders of attempting to communicate. And it is also one of the hardest parts. 

 

Having four autistic brothers who were impacted by the disorder in varying degrees, I grew up craving some sort of device that would allow me to understand them. And for them to understand me. "I love you, but please stop jumping and screaming and making everyone stare at us," I wanted them to know. "Why do you wrap your lips around hot tailpipes?" I wanted to understand. 

 

The jumping and screaming, the lips on hot tailpipes, there were reasons for those (confession: my mom had to teach me that. I actually thought the reason was "they are autistic" and am forever grateful that my mom insisted we explore further) and there were reasons for them to learn which were okay where and which were terribly dangerous. But, communication is hard. 

 

For absolute certain, though, it is worth practicing. It is worth teaching. It is worth honing. 

 

There is a saying: It isn't enough to write so you will be understood. You have to write so you can't be misunderstood. 

 

It is a lovely idea, but if you gauge your ability and success as a communicator by needing to be entirely and always understood, you will lose. 

 

Debates about the meaning of words and art by the greatest communicators are forever engaging interested minds. Not because the communication was poorly executed but because we all understand different things differently. It is a guaranteed product of this desire we have to connect! 

 

I think, instead, it is worthwhile to communicate with clarity. To practice being clear and meaning what you say. To not adjust the meaning in order to be applauded or appreciated, though we will adjust the methods and style. 

 

There is a Lily Tomlin quote I love: We are all in this alone. 

 

It reminds us we are all here, but we are never able to not be alone in ourselves. At least, that what it communicates to me. Who knows what Lily Tomlin actually meant? 

 

Maybe not even Lily Tomlin! 

 

That's the other thing. We can be clear, we can say what we mean and then change and grow and no longer know what we meant. 

 

But now, in this moment of infinity, as we try to communicate, we can practice being clear and meaning what we say. 

 

And that is what I'm trying to say. 

 

I mean it. 

 

Hugs, smiles, and love!!

Autism Answers with Tsara Shelton (Facebook)