Kim Supermutt Goodman

5 Hidden Things I Deal With as a Person on the Autism Spectrum

882
882
3

When people look at me, they see a regular person just like them. Many people think I’m just like them when we first meet, but I’m not. There are a lot of things I deal with that the average person doesn’t see.

The first thing I deal with is sensory issues. My eyes are sensitive to bright lights, especially the sun. When I’m outside, I wear a cap because it keeps the sun out of my eyes. My ears are sensitive to sound. Loud noises bother my ears, especially the sound of babies and small children crying. When I’m in a room and there’s a lot of noise, all of the sounds run together. If someone is talking to me and there’s a lot of noise or other people talking, I have a hard time hearing what they’re saying.

The second thing I deal with is not knowing what to say sometimes in a social situation. I can talk on and on about business or sports, but when it comes to other subjects, I’m lost.

A lot of adults enjoy talking about their kids and their mates, but I can’t contribute to their conversations because I don’t have the same experiences. I don’t have kids and have never been involved in an intimate relationship and don’t have an interest in those things.

Some people enjoy talking about other people. They’ll look at someone and assume things about them, but I have a hard time doing those things. I will joke and play around with people, but my only intentions are for fun, not to hurt others. I find it hard to assume things about people because I know how it feels. People pass judgment on me all the time and assume things about me that aren’t true.

The third thing I deal with is developmental delays. I like cartoons, games, toys and hobbies that kids like. I can take care of myself, but the hardest thing for me to deal with is the subject of relationships. I enjoy people, but I see them as just people or as friends. It’s hard for me to deal with the fact that people will find me attractive and have feelings for me. A lot of people are flattered when someone flirts with them, but I find it creepy.

To me, a female is someone who is like a mother, grandmother, sister or an aunt, and a man is someone who is like a father, grandfather, brother or uncle. Males and females are all the same to me. I enjoy their time and companionship and that’s it. No matter how alluring a person might be, I don’t feel attracted by them.

The fourth thing I deal with is inner pain. As a kid I dealt with abuse and neglect in the home. Then I went to school. Sometimes I struggled with school work, and other times I was picked on or rejected by my peers. There were people who thought I was an odd child and people who knew I wasn’t being treated right and didn’t do anything to help me get out of my abusive situation. I would love to erase all of my past memories from my brain, but my autistic brain has stored them in the back of my mind. I can remember everything that happened to me from the time I was 3 years old. Certain events and things I see cause me to relive my past mentally.

The fifth thing I deal with is feelings of emptiness. Growing up in an abusive home, I never got to feel the love, support and closeness most people get to feel. My peers viewed me as being, so I spent a lot of time at school sitting alone.

As an adult, I know a lot more people, locally and online. I appreciate and enjoy all of my friends but they have their own lives to live and their own family support system. I try to keep myself busy, but most of the time, I end up doing things alone because most people I know are too busy to spend time with me. There are times I will go somewhere and see families together or a group of friends having fun, and I get that empty feeling.

When a person has differences, sometimes they just need a support system to be there for them.

882
882
3

RELATED VIDEOS

TOPICS
,
JOIN THE CONVERSATION

How the Spoon Theory Explains My Energy Levels as Someone on the Autism Spectrum

246
246
3

When I first became a self-advocate as someone on the autism spectrum, I was introduced to an article called “The Spoon Theory,” written by Christine Miserandino. It explained the concept of one’s personal energy level in terms of a tangible item. Once I understood the idea, I realized that I myself could relate to this concept, and began to share it with others. Friends and family could finally understand why I might have issues at times with finishing a conversation or completing daily tasks. The answer was simple: I was out of spoons.

But just recently, I came to realize a new aspect to the entire theory. It happened when I was watching my friend during her horseback riding lesson. I had taken a lesson once before, but it was so incredibly difficult for me. I didn’t understand why, and was frustrated that I wasn’t able to take the lessons myself. I thought maybe I just wasn’t capable of riding.

Now I know that my capability has nothing to do with it. It’s all about my spoons.

After listening to the instructor constantly telling my friend how to ride the horse, and watching my friend ride, I became exhausted just sitting there on the sidelines. I was using up spoons, and I wasn’t even on a horse! And that’s when I realized: I have multiple kinds of spoons. It’s not just spoons. It’s physical, mental and emotional spoons.

I may be capable of taking a horseback riding class physically, but it would take so many mental spoons to do so that it’s not worth it. And that’s why it’s easier for me to go on a simple trail ride instead. I get to enjoy the riding without having to worry so much about controlling the horse, because the horse already knows the trail.

This revelation has led me to better understand myself in all aspects of life. It explains why there are days I feel physically exhausted but mentally restless, or the other way around. It also explains why when I have a meltdown (which takes a lot of emotional spoons) I am usually unable to function for several hours after.

I think the trick is to learn ways to cope and replenish all of the different kinds of spoons. And what works to replenish my mental spoons (self-stimming) could deplete my physical spoons. So the next step is to find a balance in coping skills. But at least now I can better understand what I’m working with.

246
246
3
JOIN THE CONVERSATION

When I Try to Help My Son on the Autism Spectrum Understand His Birthday

392
392
3

birthday candle and balloon Today is your birthday! We are celebrating you! It’s hard to believe you’re turning 5. But to you it’s just like any other day. That’s because abstracts are hard for you to understand. So I buy you a pin that says “Birthday Boy” and hope you will wear it. Maybe it will help make more sense to you that it’s your special day.

We get 12 cupcakes for you and your friends at school, but you’d rather have nothing. That’s what you said when I asked you which ones you would like while we were picking them up at the store. You replied, “Nothing,” which is your way of saying “none.” And while I’m standing there trying to decide which ones you’d like, you’re giggling and laughing at this balloon you’ve got that you snuck off the table at an Operation Christmas Child “packing party” at church. And in the midst of all this fuss of trying to get you to understand your big day, I stop for a moment, seeing your excitement over this balloon. Because right now nothing else matters to you but that big ole red balloon.

young boy playing with a red balloon

And maybe I’m the one who doesn’t understand – who just doesn’t get it. I’m the one who needs to learn that “big moments” aren’t found in trying to make things grand, but in the simple things that make up life. Like an over-sized red balloon that makes funny sounds and flies around the room because you let the air out of it after we’ve blown it up for the one thousandth time. For you, that’s where the “big moments” are found.

Maybe all you need is a little more time – or maybe you’ll never quite understand. But it really doesn’t matter, because you celebrate every day. For you, ordinary things come to life because you’ve discovered the amazing hidden in the simple. And so, while we are trying to teach you that your day is special, you are teaching us that every day is to be celebrated. Because every day is made special by the joys you find in the simple. And every day with you is a gift, not just the day you were born.   

392
392
3
TOPICS
,
JOIN THE CONVERSATION

When a Grocery Store Bagger Made the Wrong Comment About My Son's Autism

543
543
3

I went to the grocery store this evening. It was one of those trips without a shopping list, so I was walking up and down the aisles of Publix getting things I forgot the first time I went down the aisle. I finally got everything I needed, and of course I picked the line with the coupon issues. My son Brandon made a ton of noise and some of his quirky body movements as we waited our turn. He was happy though, which was all I could ask for in that situation.

As the cashier was ringing me up, the bagger asked Brandon if he would like a sticker. Brandon isn’t able to respond to something like that, so I helped him out. I said, “He would love a sticker.” The bagger looked a little puzzled, so I explained that Brandon has autism and isn’t able to speak well enough to say he would like one, but I knew he would still love one. I then realized the bagger looked puzzled because he was looking for the stickers. He replied, “I’m sorry.” So I said brightly, “Oh, are you out of stickers?” He said, “No, they’re right here.” My face fell as it hit me he was saying sorry my son has autism.

I could have gone off on him. I wanted to. I could have shamed him by saying, “I’m not sorry about my son. Don’t say you’re sorry. My son is fearfully and wonderfully made, and my son is nothing to apologize for.”

But I didn’t.

I just smiled and said thank you for the sticker.

He asked if I would like help out to my car, and I told him I would. He then asked me if my son would be OK with him pushing the cart. It was very thoughtful of him to consider this might upset Brandon. I told him it would be fine and I appreciated him considering that. I started thinking I was kind of glad I didn’t go off on him.

Walking out to the car, this bagger told my son to steer him in the right direction of the car. (We were in one of those kid’s car carts.) As he put everything in my trunk, I started buckling Brandon in his carseat. Brandon was already in the car and couldn’t really see him anymore, but the young man called out, “Bye Brandon!” with a huge grin on his face and his hand waving in the air.

My head darted up in surprise, and I smiled at him as he walked the cart back into the store. My eyes immediately welled up with tears at this awkward goodbye from the grocery store bagger who had just hurt my feelings minutes before.

Consider this: if I had attacked this young man for his “I’m sorry” comment, it is clear it would have crushed him. He would have gone home that night feeling awful and would probably vow to himself to shy away from any other autism families he meets – for nothing could feel worse than upsetting a mother like that, and he wouldn’t want to get publicly shamed again. Many special needs parents get their feelings hurt and are quick to blast someone for a thoughtless comment. (And I am not talking about those cruel people who deliberately say unkind things. Those people are a totally different story – I’ll go off on those folks all day long.) The other thing special needs parents may do is not say anything, then lay awake half the night seething about the comment and what we wish we had said.  

Before you had a child with special needs, did you know the perfect thing to say to a special needs parent? You probably didn’t. To be perfectly honest, I still don’t. I have several friends who have children with special needs, and since children are so different (especially those with autism), I’m sure I have said the wrong things. My closest friends and even my own family have hurt my feelings with comments they have made. We need to have grace with people we come across so we can educate them as best we can in those fleeting moments. This young man at Publix didn’t know what to say. He said the wrong thing, and it’s very likely he had no idea he had done so. Giving him grace in that moment allowed me to see what a kind heart he has and the effort he made to connect with this little boy he just met.

This post originally appeared on RachaelSlough.com.

543
543
3
TOPICS
,
JOIN THE CONVERSATION

The Statement That Rattled Me Most After the Charles Kinsey Shooting

364
364
1

The moment I opened the door of my car for him, Nishant started sprinting towards the front door of Costco. He seamlessly jumped up in the air, with enough height to make a slam dunk, before triumphantly clapping. His sheer exuberance was contagious. He turned back to me with curiosity. The implication was clear: “Hello! It’s Costco — the land of glorious samples. Why aren’t you coming inside with me?”

The door he had just bounded out of was still open, and I was standing next to it with my arms crossed. Catching his eye, I tapped my foot, and gestured for him to come back, “We do not run.” He pouted at me and begrudgingly came back.

“What do you have to do?” I implored.

“Nishant has to walk. Hold my hand,” he responded, rushing through his words, clearly annoyed I was keeping him from the samples.

I shut the door, and we walked inside the store hand in hand. A moment after we stepped through the threshold, he took off running again. It didn’t matter that people were milling about with shopping carts. With its expansive warehouse milieu, Costco is the perfect store for running like a cheetah and jumping like a kangaroo. So, I called out to him and made him come back and walk through the section he had just run. Slowly.

One of the women who worked there, who had surely seen him do this a million times before, smiled and told me, “It’s OK. None of us mind when he does that.”

“I know. But, it’s still not polite. He might crash into someone and hurt them. Besides, he knows better. If he keeps running, we’ll have to go home.”

“No. Nishant will not run! Behave nice. Eat the samples!” Nishant immediately interlaced his fingers with mine, his eyes wide and earnest, unwilling to do anything to jeopardize his Costco experience.

“OK, show me nice walking.”

As we walked through the store, station to station, my brother made sure to say “Thank you — you’re welcome!” to each server. Once we were done, a gallon of milk and receipt in hand, I reminded him to walk while in the parking lot.

“If you walk, we can listen to music in the car. If you run, we will listen to news.” The look of complete exasperation on his face said it all  —  listening to the news would be grueling.

Nishant is nearly a foot taller than I am and five years younger. He’s autistic, and cognitively, he’s at about the level of a 4-year-old. Although he’s verbal, his language is limited and he only repeats phrases he has been taught. Most everyday things are a struggle for him, like reading, brushing his teeth and taking medicine. At 20 years old, he has a tenuous understanding of how to navigate the world around him.

To feel control in his life, he often engages in self-regulating behaviors that provide sensory stimulation, such as rocking back and forth like he’s taking a bow, biting his hands and fingers until they are bleeding and calloused, and running and jumping. To him, that’s a way of making sense of a world he doesn’t fully understand. But, on a Sunday morning in a Costco parking lot swarming with cars and families, it’s a safety hazard.

People often point out my brother listens more to me than to my parents because I tend to be stricter. I don’t know if that’s true. In my opinion, the person who is best able to keep my brother focused and on-task is Chantel. She’s worked with Nishant for four years and is now a part of our family. Even though she’s just a few years older than I am, she’s almost Zen-like in the way she cares for Nishant. Full disclosure: My brother is not an easy kid to work with. He’s slick, speedy and stubborn. More than one person has quit within the first week of being his caretaker because it’s too difficult. But not Chantel. She’s unflappable. Stress never really seems to affect her.

And Nishant adores her. Every morning he asks my mom if “today is a day with Ms. Chantel.” She teaches him all sorts of things: vacuuming, counting coins, reading, playing the piano and how to make small talk. The two of them go to the park, play basketball, and laugh together. Not only does she teach my brother invaluable skills to help him in everyday life, Chantel offers him the gift of companionship. She is his friend.

With Chantel, Nishant rarely runs in public. Not so with me. In spite of my warnings that morning at Costco, Nishant still ran to the car. I was parked in a handicapped spot, a precaution we take because of his tendency to run in parking lots. But even though my car was close to Costco’s entrance, Nishant’s abrupt sprint forced someone to hit the brakes so hard that the tires squealed accompanied by an angry honk. The driver glared. Nishant hadn’t even noticed the near-collision. He was completely unperturbed.

On the way home, in spite of Nishant’s protests, we listened to the news. The man on the radio spoke about the recent shooting in Miami in which Charles Kinsey, an unarmed behavioral therapist, lying prone on the road with his hands in the air, was shot while assisting an autistic man, Arnaldo Rios-Soto, who had wandered away from his group home. A concerned citizen had called the police reporting a suicidal man with a gun on the street. Mr. Rios-Soto was not suicidal, and he didn’t have a gun  — he had a toy truck in his hand. Initial reports of the shooting made it seem as though it was another instance of an unarmed black man being shot by the police.

The Miami Authorities held a press conference the next day asserting the officer who pulled the trigger was neither “rogue” nor “abusive.” He had been aiming for Mr. Rios-Soto, and trying to save Mr. Kinsey’s life, and unfortunately, his shot went astray. Except Mr. Rios-Soto wasn’t a threat to anyone, least of all Mr. Kinsey.

One statement from Mr. John Rivera, Miami Dade Police Benevolent Association President, rattled me. He said, “Folks, this is not what the rest of the nation is going through.”

Isn’t it, Mr. Rivera?

The Miami authorities seem to think what happened to Mr. Kinsey shouldn’t be equated to the shootings of other unarmed black men throughout the nation. But why is attempting to shoot an unarmed autistic man somehow different? Why isn’t de-escalation the first step when responding to a call for help regarding someone who is reported as suicidal? Why isn’t de-escalation always the first step, regardless of the specific situation?

The officer who shot Mr. Kinsey, Jonathan Aleda, has since been put on administrative leave. Another officer, Commander Emile Hollant, has also been suspended for lying to investigators and saying he wasn’t present at the shooting, even though he’s the one who announced Mr. Rios-Soto had a gun via walkie-talkie to the officers on site.

The only saving grace from this incident is that Mr. Kinsey survived and will make a full recovery. Mr. Rios-Soto wasn’t physically harmed, but has been badly traumatized. His family reports he is refusing to change out of the clothes he wore that day, isn’t eating, and is experiencing night terrors. He doesn’t know how to cope. But, with time, therapy, and support of his loved ones, I hope he’ll heal.

The more I reflect on this story, I recall the handful of times I have called 911 because Nishant had run away from home. The first time I called 911, I was 8 or 9, my voice was shaky, and my words were garbled. Rather than explaining my brother had run away, I started repeatedly apologizing for bothering the woman on the line. The operator was kind and soothing. In our quiet suburban neighborhood, calling the authorities when these things happened seemed obvious. The police had the resources to locate a missing child. The police were there to keep us safe. As that 911 operator told me over a decade ago, “That’s what we’re here for. In case you need to call.”

My family has always believed the police are on our side, and we still do. All of our personal experiences with law enforcement and my brother’s wandering within the community have been positive, marked by respect and integrity. If something were to happen to him tomorrow, our first call would still be to the police.

About half of all autistic children engage in wandering behaviors, and of those who do, two-thirds are likely to have a close call with traffic. Of children with autism who have died in the U.S., 91 percent of those deaths were the result of drowning that occurred as a result of wandering. Wandering, as Mr. Rios-Soto did, is commonplace among autistic individuals. And many advocacy groups recommend parents go to their local police station with a picture of their child to inform them in advance this child has special needs and may engage in such dangerous behaviors. The idea is to give the police information in advance to better mobilize them in an emergency.

But, I’ve never seen an advocacy group provide suggestions for what to do if you find yourself in the situation Mr. Kinsey and Mr. Rios-Soto did. However, many do offer trainings for law enforcement officials to prepare them for interacting with autistic individuals they may encounter. In fact, the Miami police department has been praised for its crisis intervention training program designed to teach officers how to handle encounters with the developmentally disabled. But still, this somehow happened. In my opinion, Mr. Kinsey did everything right in a situation that went unfathomably wrong. Despite encountering officers yelling at him to get on the ground and put his hands up as he dealt with an agitated Mr. Rios-Soto, Mr. Kinsey managed to convince Mr. Rios-Soto to sit on the ground. Even when his own life was in danger, he did his best to care for and protect his client. He yelled at the top of his lungs that his client only had a toy, and that the police shouldn’t shoot. His actions are the textbook definition of heroic.

I know I would have done the same for my brother as Mr. Kinseys, as would have my parents. So would Chantel. But she shouldn’t have to. None of us should. And I shudder to think what would have happened if Officer Aleda had hit his target.

Young adults who find comfort in toy trucks or who glean immeasurable joy from the samples at Costco deserve to be treated better. So do their caregivers.

As Nishant would say, “Do not run. Behave nice. Hold my hand.”

364
364
1
JOIN THE CONVERSATION

To the Mom Who Wrote 'I Still Carry My 5-Year-Old Son'

4k
4k
33

To The Mom Who Wrote “I Still Carry My 5-Year-Old Son,”

I still carry my 7.5-year-old son.

We should be friends. We carry our sons for different reasons, but the responses we get are similar. And, like you, I don’t really care what other people think, but…you know… sometimes you just wish people had the whole story before they judge you.

My son is not a bolter, though he’ll run into traffic if startled by a loud noise. He will not regularly let me hold him, or even hold his hand, so my best defense when we are near traffic is to put myself between him and moving cars and never let my guard down.

No, I don’t carry him for the reason you carry your son. I carry mine because he’ll reach a point of exhaustion and be unable to walk on his own. Sometimes this can happen after a long time out and about, but sometimes it can happen after a short time. You can’t see his low muscle tone and poor endurance, but I’m here to tell you he’s got both of those. With great periods of intense, physical exertion comes the antithesis, and when he reaches his low points he’ll fold himself up on the ground and completely retreat within himself. Sometimes, the world just gets overwhelming regardless of his activity level and he simply cannot function. This is what takes my breath away, this complete withdrawal from the world around him. What am I to do? Sit at home and never go anywhere? Abandon an activity we may be invested in? Maybe. But we’re not in a position to do that.

So, I pick him up and carry him. This is me carrying him on a hike the day after running a marathon:

mom with son on her back looking at a waterfall

At the time, one year ago, he could still squeeze into a baby backpack (safety rated to 70 pounds – there are no products I could find that are actually intended for his height and weight, much like finding diapers to fit a 6-year-old). His mid-back is where an infant’s head would be, so though the way I used it is not as it is intended, at least I was able to distribute his weight enough to comfortably make it through our hike (by the end he had fallen asleep).

A year later, he is taller and now 58 pounds. This was us just last week:

mom holding son

When we stopped for a bathroom break, he said, “I wish you had the strap thing.” I knewhe meant he wished he could be on my back instead, so we switched positions:

mom giving son a piggy back ride

Look. Look close.

This is not a lazy child. He is deadweight in my arms, with his head resting on my shoulder. Sometimes he’ll put his face in my neck and breathe in my scent. This is not a burden. This is a gift. It’s in these moments that he allows me to touch him. This is how he shows me love, how he tells me, without words, that he needs my help. Even when I am carrying him because he refuses to go to school, he’ll go into my arms and put his face on my skin and inhale and I think ah…this is peace. And, because reaching him can sometimes be so, so hard, I feel proud when I can finally offer him something he needs.

So, I carry him.

I’m also proud of myself for being physically able to lift and carry him for good amount of time. Like you, mom of the 5-year-old, I worry I can’t sustain this forever. I started CrossFit a year ago to become a stronger runner but quickly realized a greater purpose. While most at the gym are there to become stronger and fitter (and I have those goals too), I am there to prolong the amount of time I can carry my child. I know I can comfortably squat more than he weighs (I could push press him too if needed, but just barely), and that should buy me years of, at the very least, piggy back rides. I’m fairly certain the 20-somethings next to me are not wondering how the weight on their bars equates to the weight of carrying another person. Yes, he is going to get taller and older and it will get more awkward, but as I wrote a year ago… if my choice is to make things accessible for my son or not, well, there is no decision to make because the answer is easy.

So, carry on Mama, carry on. You are not alone. I’ve got two and a half years on you, and I’m not ready to put my son down yet either. I will carry him as long as he needs, as long as I can. Because, as you already know, if you think the need to protect your children is strong, the need to protect your children who cannot protect themselves will make you dig deeper than you ever thought you could.

Carry on…

Signed,

Another Autism Mama Just Carrying Her Child Through Life

4k
4k
33
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.