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: The Power Of Sharing What We Know

Author's Note: Pope Francis is visiting America (where I live) this week. My mom is not Pope Francis. Yet the thrill of him reminds me of the thrill of her. They speak to love, they are drawn to the disabled, they want to touch the hearts and souls and bodies of all people so that those people will recognize the power of their own bodies, hearts, and souls. The Power Of Sharing What We Know is indeed real; but we must do our part to honor what is shared by doing the work of learning it. 
________________________________________

Because my mom is Lynette Louise aka The Brain Broad I sometimes get to go to events that I otherwise would never be invited to, or even be aware of. And often I'm introduced to whole industries that are beautiful with their meaning but filled with brilliant well intentioned people who are making the mistake of being stuck in a system and unaware of the harm they are causing when they throw people who don't fit in that system aside. 

Always I'm reminded why people like my mom are not only beautifully kind but also infinitely important!

BRPT Symposium gathered professionals in the sleep field from around the country.

The symposium on sleep in Dallas, TX was eye opening and inspiring for me. Mom understood the conundrum these professionals faced when trying to help people who have sleep problems but who aren't helped (and are often hurt) by the traditional methods. Rather than get creative or think outside the box, they toss them aside, justifying to themselves that the person is either too broken or noncompliant. Meanwhile, my mom offers simple seemingly counter-intuitive fixes, based in brain and behavior science, that can literally save lives and sanity. 

The audience was revived, excited, and a little bit intimidated. They would have to think different now. Most of them will think different now. It was beautiful to be a part of! Kudos to the event organizers who discover and invite speakers like The Brain Broad!

 

One of the things my mom stressed when she spoke at the sleep conference was the need to listen to the patient. The importance of trusting them to know themselves. When someone says they need to drink coffee, or turn on the TV, in order to sleep, then believe them. Trust them.

Apparently, this is a big concept. Apparently, professionals have a habit of assuming that the patient is wrong and that they can't possibly sleep better after drinking coffee, or when they turn on the TV. The entire room of sleep experts hung on her every word while she talked about the arousal model and different brains reacting differently to different things. As she implored these experts to believe that their patients have been self medicating with these habits, and to follow the clues rather than judge them, they nodded and breathed in sharply with understanding.

A beautiful and important reminder behind The Power of Sharing What We Know.

As I took my youngest son to school this morning he was chatting about a speech that he's going to make today in his public speaking class. He admitted to being nervous, hoped he'd do well, prided himself of choosing to be the first speaker today so he could get it done and let go of the anxiety sooner, shared candidly his desire to be excellent so that he can become a thought leader, all the while fidgeting with his tie. 

Again: I was reminded why people like my mom, and people like my son, are not only beautifully kind but also infinitely important!

Declyn and Dramma (aka The Brain Broad)

I mentioned the talk I'd seen my mom give at the sleep symposium, and told him how amazing and eye opening and thought provoking and fun it was. "Me and Dramma will probably travel doing speeches one day," he considered out-loud. "We know a lot of things that can help people." Then after he'd climbed out of the car and closed the door he looked directly at me through the open window adding, "But don't call it a 'talk'. It's much more than that. It's a "speech". Remember that!" Then he walked off, a little nervous and a little confident.

I drove away with a smile, sipping my coffee and thinking about talks vs speeches, the fun of labels, and the power of sharing what we know. 

Hugs, smiles, and love!!
Autism Answers with Tsara Shelton (Facebook) 

Lynette Louise aka The Brain Broad speaking and sharing FIX IT IN FIVE with an audience of autism parents and professionals.

*Please visit my mom's websites to see if she'll be doing a "speech" near you or to invite her to "talk" at your event. tee hee!

www.lynettelouise.com
Direct Upcoming Performances link:
http://www.lynettelouise.com/performance-dates/
www.brainbody.net

Autism Answer: The Great Guest Giveaway, Conversations & Autism, and Stories that Teach!

                                                                                                                                                           
EDIT: Here it is! The direct link to the episode with my interview!
A NEW SPIN ON AUTISM: ANSWERS! - iPad App for Social Skills and Behind the Curtain Story of Lynette Louise
                                                                                                                                                      

Hanging with The Brain Broad at a convention in Los Angeles!

I was interviewed for the Great Guest Giveaway segment of the popular podcast A NEW SPIN ON AUTISM: ANSWERS! with Lynette Louise aka The Brain Broad. We talked about parenting, writing, and the gift of having a unique point of view. 

Also, because it was the Great Guest Giveaway, I offered to give away a copy of my book! Which meant, I had to quickly get a copy of my book!

The interview was recorded a few days ago and will be available for our listening pleasure tomorrow. So, I ordered a copy of my book to sign and give to the first person who follows the instructions given to get it. I got the book just in time! It's sitting here beside my computer waiting for me to sign it for ya!

[Have a peek at my book, Spinning in Circles and Learning from Myself: A Collection of Stories that Slowly Grow Up, here: http://www.tsarashelton.com/books-places-i-m-published ] 

The guest who was on before my short segment is Karen Kabaki-Sisto, M.S. CCC-SLP, a certified Speech-Language Pathologist and Applied Behavior Analysis instructor. By the time I called into the show her interview was winding up, but I could feel the awesome energy! She was talking about her invention, "I Can Have Conversations With You!™” , a life-changing social language therapy system for the iPad that helps people with autism make sense of words, gestures, and feelings. It helps them  have confident conversations while building stronger social relationships. My friends, we're all going to learn from and love listening to the experiences and ideas behind this beautiful and passionate guest! 

Of course, we have come to take that for granted with every new episode of A NEW SPIN ON AUTISM: ANSWER! Cool, right?!

I truly hope everyone tunes in. Not just to hear me and the host (who is my mom!) chat and giggle and share stories, and not just to have a chance to get a free copy of my book, and not just to learn from and enjoy Karen Kabaki-Sisto chat about communication and social skills and her autism app, which The Brain Broad sounded really excited about--although those are all good motivators for tuning in.

I also hope you'll tune in to remember why A NEW SPIN ON AUTISM: ANSWERS! is our favorite podcast, with our story-teacher host, The Brain Broad!

And because my mom cares so much about getting this information to families in an entertaining, accessible, and easy to understand and implement way (lucky us!) all episodes are forever fun and forever FREE! 

I'll share the direct link to my show tomorrow, but for now, I encourage you to listen to a few you may have previously missed!
                                                                                                                                                             
EDIT: Here it is! The direct link to the episode with my interview!
A NEW SPIN ON AUTISM: ANSWERS! - iPad App for Social Skills and Behind the Curtain Story of Lynette Louise
                                                                                                                                                       

Hugs, smiles, and love!!
Autism Answer with Tsara Shelton (Facebook)

                 A New Spin On Autism: Answers! with Lynette Louise aka The Brain Broad!

Autism Answer: Read Between The Lines~ A Guest Post By Jory Shelton

It's spring, and my son is blossoming! Well, all of my sons are blossoming, but my oldest has written today's guest post, so let's look at him! 

His post is about communication. Growing up with autistic uncles, brothers, and friends--it's not surprising that he's got ideas and thoughts growing organically in regards to this topic. It's fertile ground indeed! 

Season after season we grow and change and evolve. My son--in his time and season--is looking fabulous from where I sit. From my time and season. 

Happy Spring!! 
and Happy Reading!!
~Tsara Shelton

Read Between Lines

By: Jory Shelton

www.fourbrothersoneworld.com /Facebook/jory.shelton

When I was a boy I believed in many things. I thought Santa was real, I thought I would always love Power Rangers, and I thought that the hazard button on the car would turn it into a plane. 

One thing that I have found most interesting among all of the sort-of silly things I believed as a child was my belief that what people said is what they meant. 

I am twenty now, and I still find the whole idea of saying something while implying something else--or meaning another thing entirely--incredibly fascinating. From the simple, "I'll be there soon" when it turns out to be four hours, to the more complex, "I love you". 

Life just seems so unnecessarily complex sometimes.

I'm writing this right now because I'm single, bored, and hungry for a good story that really strikes my fancy. I have been living day to day dreaming of a world where I can get a job, do great things, make good money, and have a family to support. As I sit here thinking, like I do most days, about why I don't have these things going for me just yet I ponder; if people were to mean what they say, then I would have all of these things. You know, if that man who stopped me on the street about a job that paid twenty dollars an hour had really meant what he was dishing out, and if that pop-up on my computer actually meant that I won one hundred thousand dollars.... and then there is love. Romantic love, to me, is one of the single hardest subjects to justify. Saying something about a job is one thing, but putting someone's heart and soul on the line for something that no one can be absolutely sure of, now that just seems crazy. 

See, the subject of this inquiry, this questioning quest, is maybe to you a simple, "why do we say something that we just flat out are not sure of?" Maybe that's what it is to me too. But here's what I have learned through living, breathing, and wondering. 

People say many things, often we just say something to say something. Perhaps if words only came with struggle, as they do for my uncle, we would be more selective and real, as it is with my uncle. But most of us use words too easily and there isn't always a real belief to back up our words. So anytime to you talk to someone just remember that they are (almost always) equally as sure about what they're saying as you are about what you're saying. Everyone is on the same page, some people just don't accept that. 

We are all equal in every way and in every word, believe that. 

The Author: Jory Shelton
Communicating with words
Learning to mean what he says,
and listening with a similar hope. 

Autism Answer: Slow Down, My Brother Is Talking

So many people are in such a hurry.

It's great once in a while. Rushing and effectively getting tons of stuff done in a day or two feels exhilarating and fantastic! But I think it's unhealthy as a lifestyle choice, for most people.

I'm not a very "rushed" kind of gal. I don't put a lot on my plate, and rarely take on projects with deadlines or excessive multitasking warning labels. However, even I am often guilty of being in a hurry.

I like fast conversation. I like layers and quick wit and surprising revelations. I crave personal epiphanies and different ideas stumbling all over each other until they connect like some fabulous crazy integrated puzzle!

Often when there is coffee flowing and the groove is great, my brother will want desperately to add to our thoughts. He, too, finds fun in sharing perspectives, adding layers to thought, and encouraging laughter with his cheeky satire. However, at thirty-two he is a verrrrrryyyyyyy slow talker and extremely difficult to understand.

He's also used to people assuming his sounds are just sounds, and not slowing down to hear the word or even believe in it. For years and years it was only my mom who truly believed in his language. So he has a habit of giving up easy, and some of us have a habit of letting him.

Now that he's getting slightly clearer there are many family members and friends--and of course his girlfriend!--who believe, but still it is only mom, and maybe his girlfriend, that is ALWAYS willing to slow down and listen. Regardless of the to-do list, the ticking of the clock, or the quickness of the conversation.

Every time that I catch myself feeling impatient with my brother's slowness, I have to laugh. What am I in such a hurry for? The next epiphany? I already know that my brother has some of the most interesting and surprising insights of all. Why not slow down and wait for it? And his humor is brilliant!! If it's a laugh he's offering, it'll be worth the wait! 

Hearing my brother's words is always worth the wait. Letting him know we want to hear is always worth the wait. Taking time to allow him to hone his skill rather than make him feel inadequate is forever worth the wait. 

This is what I'm so passionate about sharing. The answers autism has offered me. In another home, a place where everything is easier, it is also easier to ignore important truths and take the easy way. But later, the easy way has almost always given us bad habits like blaming, rushing to success, a willingness to give up easily--or push regardless of who we might hurt--and a lack of comfortable introspection. Challenges and difference highlight the important stuff. We don't all choose to learn it or see it, but often we do. Because it offers itself to us, and because not much is easy anyway, so we're more willing to take the time.

I'm betting you have a loved one that you rush. Whether it's yourself, your child, your sibling, your spouse... maybe you're rushing language, skills, getting out the door on time. Don't beat yourself up over it, but do go ahead and slow down.

It's important to have goals, and to go after them with intention and focus. But it's also smart to take your time, to notice and connect with the world along the way. Otherwise you'll reach your goal, but you'll get there empty handed.

All the important stuff, all the people and lessons and beauty that you need in order to enjoy and use your "goal" to its fullest, happens along the way.

So slow down. Our loved ones are talking.

Hugs, smiles, and love!!
Autism Answers with Tsara Shelton (Facebook)

~~My brother talks with his mouth, but also sometimes via typing. Still, he is verrrryyyyy slow and requires assistance. In my brother's words, "I type one letter per minute, but you can read, at whatever speed, you best perceive."--Dar Shelton~~