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: Smiling - A Sibling Story

I wrote the following story last year for my mom's newsletter, The Loop, after she and my brother visited me in Quebec. I'm in the midst of putting together another edition of The Loop and got a little sidetracked when it occurred to me perhaps it would be fun to share this story here with you. Also, I hope you'll sign up for The Loop so you can always get news and updates and fun stuff first! Follow this link: The Loop   

Me and Dar - Smiling

"Dar, look into the camera with me. Okay, smile!" Sometimes I take selfies with my brother while we wait for mom. She'll be working, or at a health appointment, or in the shower, and we'll be hanging out. We love listening to music together. We enjoy the odd verbal exchange, but his words are most often challenging for me to decipher and mine are most often of the less than inclusive "this is what I think about all these things I'm thinking about" variety. So, I've noticed, I've gotten in the habit of pulling out my phone and bugging him into taking a selfie with me. 

Now, in most of our selfies, Dar is not smiling. Not because he didn't smile, but because he doesn't hold the smile. And by the time I snap a pic, I've missed it.

However, Dar is doing something new.

Well, Dar is doing several things new. Ever since mom and Dar left their house behind and have been transitioning into this new life of travel he's been practicing new and old skills in surprising abundance. But for the purpose of this moment I'm focusing on the way he's practicing holding a smile for the camera.

At the park, Dar loves the swing. A few days before I took the photo you see above, I approached him with my camera - mom was with us, sitting in shade nearby - and asked him to smile. He did, and I snapped a photo a little late to capture it. As usual. But then he smiled again. And held it. I had been about to walk away but, thankfully, I felt his energy and noticed. So, I took another photo. Then he shifted on the swing and smiled toward me again. It was such a familiar smile. Not one I am used to seeing on my brother but the one I am used to seeing on those of us who like to smile for a camera. Not a fake smile, but a held smile. I took more photos.

Over the next few days I noticed it again. At first I wondered why this was a skill he'd bother to work on. But silly me! This whole transit(ion) lifestyle - my mom and brother living in an RV and traveling together - includes Dar and mom speaking, being on camera, sharing what they learn with an audience. So what a brilliant time to practice! Here with me, his silly selfie taking sister!

Dar's smiles, the ones he's always shared, are luminescent and transcendent and infectious. And though they were often long lasting they were rarely held for the camera. I hope, for the sake of everyone, that Dar continues holding those delicious smiles for the camera.

And I love that he's been practicing them with me.

~ 

Follow this link for Autism on the Road videos with mom and Dar: Autism on the Road Playlist

 

Hugs, smiles, and love!!!

Autism Answers with Tsara Shelton (Facebook)

Autism Answer: Pinwheels and Prevention (Child Abuse Prevention Month)

 

Tattered colorful toy wheel with statue of children behind it.

When I think of a pinwheel (which, I admit, I rarely do) it's not so much a feeling of childhood innocence I get but, rather, the sweet simplicity and reliance on an outside force to move it - like a child. I think, because pinwheels are often used as a prop in storytelling to denote childhood innocence specifically when that innocence is going to be manipulated or completely mutilated, I have come to see them more as a warning about childhood innocence.

April is Child Abuse Prevention Month. It is also Sexual Assault Awareness and Prevention Month as well as Autism Acceptance Month. [A list of awareness dates can be found HERE] In my life, these have played an important role and I find it simply neat that they choose to be together in April, when my mom also has a birthday. She too has played an important role in my life and is the reason child abuse prevention, sexual assault prevention, and autism acceptance are major players in my world.

My mom is an unusual mom. Not surprising, she is an unusual woman and they make unusual moms. She herself struggled with a not-so-typical brain back in the days when nobody was talking openly or thoughtfully about autism or synesthesia or schizophrenia or any of the other variety of diagnosis professionals have flirted with for mom. Also, she was a “strange” child at a time when smacking kids around was almost expected, and unusually harsh abuse was kept quiet. And sexual abuse? Well, as my grandma said when mom told her I had been sexually abused by my step dad, “These things don't have to end a marriage, I can pay for her to go to boarding school.” Sort of explains why grandma and grandpa stayed together till the day he died and mom lived away from home from the age of fifteen.

What on earth does my mom growing up in an abusive environment with an autistic brain have to do with pinwheels? I myself had no idea until just this moment.

Pinwheels for Prevention was started in 2008 by Prevent Child Abuse America. The idea is to shift our thinking and actions around child abuse prevention. Rather than publish and post pictures of abused children with copy that begs us to care, which we do, overwhelming us to the point of being unable to think of good ideas that might make change, Pinwheels for Prevention asks us to focus on our community and any actions we can take to prevent abuse before it happens.

This brings me back to my mom.

My mom cared so much about becoming a mom and doing it with fairness and love. I think it's in her soul, but growing up in a home that treated her and her siblings in abusive and unfair ways had her hiding in a cubbyhole making clear and specific plans to be better than that. My mom was able to bear two live children, me and my sister, and one son who didn't make it. Then for health reasons she had to have a hysterectomy at the young age of twenty-three. And that is when she began to adopt and otherwise open our home to others. Children from homes of abuse, children with disabilities and dysfunctions, children in need of fairness and love. Fairness and love that was not offered in their homes or in their communities. These people became our family.

My mom wasn't able to prevent the abuse that had happened before my adopted siblings and temporary friends stayed with us, but she was able to help everyone understand how these things happen, what to do to heal ourselves, and – importantly – how to break the cycle. For some of us (like me and my siblings) this is not new news, that there is a cycle of abuse and that we must take action to break it. For my mom, this was horrible wonderful news. Horrible, because she had to contend with the mistakes she herself had made before seeing the cycle, and wonderful because something could be done and she would do it.

Perhaps the hardest most wonderful time in our lives so far was during those years of hard lessons, introspection, walking away without knowing where to go, seeing my mom make it all up out of thin air, necessity, and creativity.

My mom was planting pinwheels for prevention. She was focusing on her vision where all children grow up surrounded by belief in them, raising the bar, fairness, love, and support. For my brothers who were on the autism spectrum, this was easy for my mom at home but impossible in the community. Schools, neighbors, grocery store shoppers, parents at the park; everyone in the world treated mom and my siblings like problems, dangers, or people to pity. This, my mom and so many other special needs parents have said, is the hardest part of raising children who are disabled or cognitively challenged. So my mom took us out into the world, often, but always carefully and cleverly. She knew that the world would not change if we hid away, and she knew we would not become independent happy people if we hid away, and so her pinwheels were us and the attitude she practiced. “We stretch people,” she likes to say, it helps her take the time to explain and be patient with others.

Mom's diligence and consistence with me and my siblings worked wonders. We have all grown in ways professionals and statistics argue against, and we are happy.

Around the globe my mom plants pinwheels. She works and speaks and writes and performs, always with a meaningful message and specific actions to be taken that include and care about everyone; but especially children. Especially children with extra or special needs. 

Children are like pinwheels in a way. They are reliant on outside forces to spin them and unable to choose which outside forces and in which way. Unlike pinwheels, though, children are alive. They matter more. We have so much power with children; they need us to care about their reliance on us.   

The pinwheel is a symbol. And I think it is a good one. Planting pinwheels can remind us of our role in the lives of children; whether we have our own or not. 

We don't all have to be extreme like my mom to plant pinwheels, but we can all plant pinwheels. We can focus on a vision of the world where all children grow up surrounded by belief in them, raising the bar, fairness, love, and support. And we can make shifts with that in mind. We can consider our attitude in the grocery store when a parent is struggling with their child, reach out to an overwhelmed mom or dad we know and do something to help: make a meal, watch children for them while they nap, simply tell them we see them and point out something great you noticed they did. Notice great things they do. It is not hyperbole to say that these shifts can change the course of a life, can actually help an overwhelmed parent not become an abusive one. And where abuse exists and does happen, being a safe space rather than a closed off judgmental one can mean a child reaches out. These are pinwheels we can plant.

Also, we can plant pinwheels. Perhaps get together with a child in your life and make them out of materials you have at home. Get creative, plant pinwheels, create connections.

Or, adopt a bunch of kids and be amazing and teach the world to do the same like my mom does.

Whichever you prefer. 

 

Hugs, smiles, and love!!

Autism Answers with Tsara Shelton (Facebook)

Autism Answer: Seeking a Safe Way to Be Open and Accepting

 

Me and my Brother

“I just wanted to be nonjudgmental and accepting.”

My brother was looking at me expectantly, his big sister who always had something to say about the things he had to say, and had to wait an uncharacteristically long time for my reply.

His confession had caught me off guard and left me momentarily at a loss for words. I was too deep in a thick fog of feelings that understood and feared and felt and didn't know the right answer.

My brother had been assaulted in his apartment by a man he had opened his door to, despite the late hour and unlikely explanation for it. Of course my brother had opened his door to this stranger knocking at an inappropriate hour with a weird reason, that was who my brother himself often was and didn't he only want people to open their doors to him and hear him out?

Oh, my heart was aching and my ideas lacking.

I find myself wrestling often with this question of balance. Not judging too harshly, being open and accepting and helpful and willing to open doors or accept ones opened to me, while being safe and careful and teaching my children to do the same.

This is a big important thing and once I was able to fight out of the fog of feelings and find words, I admitted as much to my brother.

We talked a long time about how valuable it is to strive for a world that isn't so focused on defending itself that it won't risk opening doors when people are reaching out to us in unusual ways at unusual hours. There are so many people like my brother who struggle with social cues and norms and end up craving company and kindness at unusual times and in unusual ways. We talked about how hurt he himself felt when he would knock on a door at an unusual hour asking if he could look at the old cars in the yard only to have the person call him cruel names and threaten to hurt or even kill him if he ever came back. And I reminded him that it wasn't necessary for the people to open their doors and let him in for him to feel less hurt. Had the people – as some had – asked him to come at a better time and not immediately reacted by speaking to him in anger, that would have been accepting.

But there are so many grey areas here. And in the end each situation will be different and often difficult and it's just easier to push people away when they are strange or unlike us. And it's even sometimes safer in the moment.

But in the bigger picture, in the world where we keep kindness alive mostly only during business hours and when we understand easily the problem (dead car battery, missing animal, not quite enough money at the checkout) and push or react in anger when the person doesn't make sense to us and we feel overly inconvenienced or inadequate, or where we overcompensate by being ridiculously (and temptingly) generous and yes oriented, we are not building a safer world.

You know, I don't want you to open your door to my brother when he knocks at 10PM asking to peek in the windows of your cool looking old car. Not unless you want to. But I also don't want you to threaten to kill him or call him a f*&%ing lunatic either. I think you can simply tell him to leave and that it's too late for him to be there. You can tell him that you aren't comfortable and even that you don't want him to come back. I hope you will tell him these things, because I also don't want my brother to knock on your door at 10PM asking to peek in the windows of your cool looking old car. It's late. I'm generally in bed by then and maybe you are too.

I talked with my brother about this and more. I gave him specific tips about not opening his door or inviting people in at certain times or when he doesn't know them or simply if he just doesn't feel right about it. He can simply say no. Or pretend he's not home. There is nothing judgmental about that.

I don't know if the man who assaulted my brother would have moved on to assault someone else, had he not been granted access to my brother's apartment. I don't know if that one “no” would have stopped him that night, maybe even prevented other nights. That is possible. Not permitting the harming of others is part of how we teach not harming others. So, it's possible. Though not promised.

But had my brother not granted access, I do know it would have prevented his own assault. And in this specific instance it is my brother that matters to me. Not society, not the story of how that man ended up knocking on a door to rape my brother, not you and your cool looking old car in the yard, my brother.

I wish he would have known he could say no and still be nonjudgmental and accepting.

And since that day we have practiced and both gotten better at it.

I admit, it's not easy to know how to help when people are extremely unlike us. Or struggling in unusual ways. Movies can make us want to be the one who reached out and calmed a situation down or helped an outlier or struggling person during an extreme time of stress or hurt. But when we're not in a movie we generally have no clue how to truly do that safely or correctly.

It isn't easy. It isn't obvious. Not for most of us, anyway.

But I'm proud of my brother. He was able to pinpoint where he went wrong, he talked with courage to the police about what happened, he leaned on me and our mom to get through it but also took the reins on his own healing and chose lessons to learn. The learnings didn't make the assault a good thing, being raped in your apartment is not ever a good thing, but he did good things with the hurt that happened to him. I'm proud of my brother.

I hope he'll always let me talk and learn with him in similar intense and important ways.

And I hope he and I will continue to grow safer and kinder and a little bit smarter together. 

Hugs, smiles, and love!! 

Autism Answers with Tsara Shelton (Facebook)

Autism Answer: Were We Supposed To? A Story of Rye's Rape

April is both Autism Awareness Month & Sexual Assault Awareness Month - As you know my mom,  Dr. Lynette Louise (aka "The Brain Broad") is an expert in both, and she even has a birthday on World Autism Awareness Day (April 2), but what you probably do not know is that my youngest brother, Rye, is also an expert (albeit, a different kind) in both, and he too has a birthday in April.

Today, April 27th, is Rye's birthday. Happy birthday, little brother!! He will be coming over in the afternoon to use my wifi and to pig out on pie with whipped cream. I'm looking forward to it!

In the meantime, here is an important true story that incorporates both sexual assault awareness and autism awareness. It is not an easy story to read and was far more challenging to live through. But, we did. Because I believe, we are supposed to.

Were We Supposed To?

A Story of Rye's Rape

The camera was on me, the officer was waiting for my reply, I was holding back tears wanting oh so bad to be strong for my brother. This was his hurt, his horrible horrible hurt, the crime committed to him, his body and safety, but in that moment I just couldn’t hold back the pain of my own guilt.

“He wanted to stay at our house, he asked if he could sleep on the couch,” the tears are escaping now, but only such a small percentage, I am able to hold back the neverending flood that pulses behind my eyes and throbs in my head. “I told him to go home, he has his own apartment, I made up something about not wanting to start a habit of him sleeping here at our mom’s house, but the truth is I just didn’t feel like hanging out with him anymore. And then,” I look at the officer, he too wearing a touch of hurt and guilt, and say it: “And then he went home and got raped.”

# # #

It was late but I was still awake. The phone rang and I saw on the caller ID that it was coming from the gas station in town. Rye. 

I considered ignoring it, but that might give him reason to have a temper tantrum in the store which might lead to him not being allowed back there for a while, which would lead to me having to help him more often.

So, I answered.

“Uh, hi,” he stammered, “I was raped. I escaped out the window, he might still be at my apartment.”

Blood left me so fast I nearly passed out. Had I heard him right? “Wait, what Rye? What?”

“Some guy came in my apartment and raped me. He made me go in the shower after so I snuck out the back window and came here to call you, I’m only wearing shorts. I can’t stay.”

“Oh, my god! Rye, really? Oh my god. Okay, are you okay? Did you call the police?” I was trembling now. 

“No. Should I? Am I supposed to?” Rye asked, unsure. He sounded out of breath and scared. 

Am I supposed to? 

“Actually, Rye, let me call my husband and have him pick you up. I’ll call the police. We’ll go from there. Just wait at the gas station. Hold on, the guy that raped you might still be at your house?”

“I don’t know,” Rye admitted, “I just snuck out the back but I think I heard him go out the front door.”

“Okay, you wait there if they’ll let you. Milton will be there soon and I’m going to call the police now. I love you.”

“I love you, too.”

We hung up and I called my hubby. We were happily married but living in separate homes. 

“Ya.” He answered.

“Rye was raped in his apartment and is waiting for you at the gas station. Can you go get him? I’ll call the police.” 

I heard my hubby jolt. “Uh, okay. I’ll call you when I’m with him.”

I called the police. A woman answered.

“What’s your emergency?”

“Yes, hi. My brother lives in Teague and someone just broke into his apartment and raped him.”

“What?” she asked.

“I don’t know what I’m supposed to do. Someone just raped him and he escaped out his back window. My husband is picking him up from the gas station and will be with him. Can someone go there and, I don’t know, take a report?”

“Yes, we’ll send an officer. What is his address?”

Do I give Rye’s apartment address? Do I send Rye and my hubby back to his place to meet the officer, back where the trauma literally just occurred? But where they may have a better shot of catching the rapist? 

Am I supposed to? 

I give her my brother’s address and call my hubby. 

“How is Rye?”

“He’s here with me. The front door is open, I think the person ran off and left the door open.”

“Can you please stay there with him until the officer arrives? Thank you, and can I talk to Rye?”

So I talked with my brother while he waited to tell the story to the police. I apologized for sending him home, he said it was okay, I apologized that I didn’t have enough gas or gas money to come see him, he said it was okay. He told me what happened and I cried.

A man had knocked on his door, late but not impossibly late. It was only a little after ten PM. Rye opened the door a crack, sort of recognized the guy from here and there, and told him he didn’t have time right now. The guy said something about wanting to see or buy CDs or movies or something, Rye talked for a bit, opened the door wider, and the man pushed his way in, said he had a gun, made Rye lie on his stomach on the bed. Rye couldn’t see a gun but there was something in the man’s pocket,  he couldn’t see the man now, but heard him get a condom. The man raped Rye, my baby brother, who was oh so scared and it hurt, and then told him to shut up and get in the shower. Rye got in the shower and soon, too scared to stay in his apartment, left the shower running and snuck out the back window. 

Then, he phoned his sister. A sister who had told him to go home because she didn’t feel like hanging out with him.

Was I supposed to let him stay that night?

Rye is not diagnosable as autistic anymore, my mom and he have done so much work on his social skills, behaviors, and brain change that he is not considered on the autism spectrum anymore. But he still is a strange, quirky guy. He still struggles with a lower than average IQ, and issues from before my mom adopted him (Fetal Alcohol Syndrom, for example.) He is a guy easily (and often) taken advantage of, largely because he does not want to be cruel and judgmental in the ways so many have been to him. So he is welcoming to strangers at ten o’clock at night.

The police officer took Rye’s statement, and then called me.

“We will take him to Waco for an examination, do you want to come?”

“I want to,” I admitted, “but I don’t have enough gas money.” 

I hoped the officer would offer to pick me up, at which point I would ask my hubby to stay with our sleeping children, but he did not.

“Okay, I’ll have Rye call you when it is all done and I have him back here in Teague.”

I thanked him, I told Rye I love him, I hung up and called mom.

# # #

The police officer nodded in understanding. I looked at him, sitting slightly behind and to the right, my right, of the camera.

“I saw that guy, just some guy, knock on Rye’s door. I was patrolling the block. But I didn’t recognize him. I don’t know who he is.” The officer looked young and a little shaken, but he was mostly professional. I don’t know if he was trying to justify himself to me or give me a story of understanding, so I would not be entirely alone in my guilt. Or maybe he was just talking, thinking out loud, remembering that night.

So many little things that could have changed the story. Why hadn’t I let Rye stay? Why hadn’t we been better at teaching him it’s okay to say no, it isn’t judgmental to say no? Why hadn’t the police officer taken more notice of a man at Rye’s door late at night if he was on patrol?

Was he supposed to?

# # #

I spent the night after Rye’s rape sleeping on Rye’s couch. Rye and I agreed that he wanted to get comfortable in his apartment and so we worked on a plan. I stayed there, visited more often, and remained particularly available to him. He agreed to keep his door locked and just pretend he isn’t home if someone knocks, he listened when I explained why that’s not mean or judgmental, and he has since then done his best to always have a phone so he can call me or our mom in an emergency. He can call the police. 

He still lives in that apartment and he likes his life.

Today is his birthday. 

He is 35. 

Rye comes to visit me most days and we enjoy each other’s company. I help him often with things online, and he helps me sometimes by lending me his car. We are a good team.

And when I visit him he is generally ready for me to leave after about twenty minutes. When he visits me, it’s about the same. 

He goes to his home and I go to mine.

We are a team, but the trauma of his rape did not leave him – or me – dependent or desperate. We have learned ways to stay safer and grown smarter, but we have not given in or given up.

Were we supposed to?

# # #

Me and Rye at my house