Lydia Wayman.

When My Visible Illness Hides My Invisible Disability Advocacy

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Hi! I’m Lydia.

I’m a young adult with mitochondrial disease (mito). Mitochondria are in every cell, and they produce energy for the whole body. Well, yours do, but mine don’t do such a great job. It’s like using an iPhone with only 30% of its battery left and realizing your charger is faulty. In a human, that “low battery” means that my organs don’t have enough energy to do their jobs. I might qualify as bionic, as I have an insulin pump, a feeding tube, an ileostomy, and a central line (a permanent IV that goes in by my collarbone and ends at my heart). I have had many ER visits and hospital stays, surgeries, and procedures. I was in a nursing home for over a year (where no 25-year-old should have to be!), but I live semi-independently now, with an aide during the day and one-to-one nursing at night.

I got my master’s degree in English and nonfiction writing while in the nursing home. Unlike most vocations, writing/editing aren’t affected by unexpected hospital stays, broken sleep, or long periods when I can’t leave the house. It keeps me busy and engaged with other people and outside events. My apartment may be tiny, but my world is limitless!

What you just read is the biography of a disability advocate. There are a lot of ways to advocate, but I like to share my experience and answer questions so parents and teachers can do the very best for their kids.

Lydia Wayman.
Lydia Wayman.

While I do think it’s important for people to be aware of mito and other illnesses and disabilities, that’s not why I advocate. Awareness is important, but it’s not possible for everyone to know about every issue. Instead of specific signs and symptoms, I try to challenge people to see past assumptions and stereotypes and give others a bit of grace and a lot more respect.

Sometimes, disability feels like an invitation for assumptions and stereotypes. I spark attention because people can see my lines, tubes, pumps, dressings, and so forth. But to me, the “hardware” is just another part of my body. I’m so used to it, I don’t even see it when I look in a mirror. I always forget it’s the first thing most people see. If I were about to present at a conference about disability, and you took a seat in the audience, you would be sitting there waiting to me to delve into certain topics. After all, it’s a presentation about disability, and I’m at the front of the room in a wheelchair!

I would probably throw you for a loop when I started to speak. What if I told you that mito hardly comes up in my advocacy work? When I write and speak to groups, the bio I submit for the program reads more like this:

Lydia Wayman is an autistic advocate with a B.S. in education and an M.A. in English and nonfiction writing. Her presentations, writing and art use her experience to educate others about autism. She is a young leader with the Autistic Global Initiative and has lead youth with disabilities at a leadership conference and spoken to scout troops, parents, and several times at OCALICON. She contributes her writing about autism to magazines, books, and newspapers. Lydia enjoys mentoring younger autistic friends and supporting families by helping them understand how their kids see the world.

Mito might be what you see, but it’s not who I am. If I were to stop the pumps and disconnect the lines, you wouldn’t see mito. Autism is different. It’s a part of every thought and feeling and experience. That’s why I focus on autism in advocacy. I don’t care if you understand the medications I take, but I hope by knowing who I am, how I see the world, and why I’m different, others will take a step toward accepting the differences in all people.

When I talk and write about autism, I tend to focus on sensory issues, communication, and the impact typing has had in my life. I show how assumptions about my behavior are usually wrong. Overall, my goal is to help other people see that they never know the whole story about someone else. I do want people to understand autism — and mito — but I’d much rather people understand how off-base and harmful quick judgments can be. That would definitely help the autism community, people with serious illness and everyone else.

The next time a disability advocate rolls into town for a presentation, she may come in a wheelchair loaded with pumps, medicine, and tube feeds… so she can talk to you about autism. The next time you hear a child screaming in the grocery store, you see a person stand up from a wheelchair to reach something, or if your friend cancels plans yet again because she doesn’t feel well, remember that what you see is never the whole story.

Follow this journey at Autistic Speaks.

The Mighty is asking the following: Tell us a story about a time you encountered a commonly held misconception about your disability, disease, or mental illness. How did you react, and what do you want to tell people who hold this misconception? Check out our Submit a Story page for more about our submission guidelines.

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'Mommy, I Read There Is No Cure for Autism'

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Kaydence and her younger sister, Piper
Kaydence and her younger sister, Piper

It’s not unheard of for my oldest daughter to worry. It’s actually quite the norm. She is 9 years old and incredibly bright and insightful. These qualities seem to come with a certain degree of personal cost, though. She’s easily overwhelmed and worried by things that wouldn’t register as a blip on the radar for a typical pre-teen. I’ve spent many nights trying my best to calm her fears as she’s sat in bed, worrying about things like the Ebola outbreak and acts of mass violence in school. So, the other day, when I sensed her anxiety and asked her to tell me what was on her mind, I wasn’t expecting her answer to be so deeply personal.

“Mommy, I read in a book that there is no cure for autism. That makes me really sad for Piper.”

For a moment, I was at a complete loss for words. My silence seemed to deepen her sense of worry, and she followed up with “Is that true, Mom? Is she going to be OK?”

Before I could find the right words, my husband carefully explained to her that autism is not a disease and should not be viewed as such. More importantly, he assured her Piper is and will continue to be just fine. This seemed to satisfy her for a moment, but the proverbial wheels were turning. A few minutes later, she pressed us further.

“If it’s not a disease, then what is it?”

By now, I’d recovered enough from my thoughts to add to the conversation.

“People who have autism don’t need to be cured, Kaydie, because there is nothing ‘wrong’ with them,” I offered. “They just experience and process things differently. Instead of searching for a cure or a fix for something that isn’t broken, there needs to be a greater effort to understand how people like Piper see the world. Then, we can learn to relate and communicate in a way everyone understands.”

I went on to explain that Piper spends so much time in therapy not in an effort to be cured, but rather, because she was having difficulty showing and telling us how she was feeling. I did my best to explain that helping Piper express her thoughts and feelings is an important part of understanding autism, as a whole.

I hoped, in that moment, this was enough of a learning experience to ease her anxiety over her sister’s future. It seemed to be. She went back to the movie she’d been watching with her siblings, seemingly satisfied with the conversation.

I was the one left exhausted and saddened by this brief exchange. Even though campaigns for autism awareness are everywhere, this conversation left me feeling like we’re fighting an uphill battle. Where, as human beings, are we getting this so wrong? My 9-year-old is a literal thinker, and therefore asks questions about things that don’t make sense to her. How many other 9-year-olds are reading the same literature she read? How many of them stumble upon misinformation like this, take it at face value, and view autism as some kind of incurable disease? If anything scares me about Piper’s future, it is this type of mentality.

Perhaps some of the efforts to raise awareness are misguided. Is it possible we are focusing so much on educating this generation of parents that we are forgetting our children’s generation needs educating, too? As parents of children with autism, we are a community with a voice getting collectively louder and in doing so, gaining much needed attention. But how can we expect our children to be the next generation of advocates if we are not enabling them to understand, as well?

If there is one thing I wish people would stop getting so wrong about autism, it is the notion that those who have it are “suffering” or somehow broken.

I truly believe it’s time we redirect our call for awareness to include our young children. Equally if not more important, we must reach their classmates who have had no firsthand exposure to autism.

If there is a lesson to be learned here, it is this: It will be far easier to plan carefully and to lay a foundation which educates children correctly from the beginning than it will be to try to change their mindset later in life. We’re currently fighting our hardest to break through the barrier of preconceived notions about autism. If we don’t give our children a better starting point, we will never progress past this point, ourselves. We will merely pass along to them the same obstacles we are fighting so hard to overcome today.

The Mighty is asking the following: How would you describe your disability, disease or mental illness to a child? Check out our Submit a Story page for more about our submission guidelines.

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This 'Hugging Machine' Aims to Help People on the Autism Spectrum With Sensory Issues

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A Denmark-based company is bringing to market a This photo from Gloria Mundi Care shows a person lying in the OrbisBox. deep-pressure device aimed at soothing the sensory issues of those on the autism spectrum.

The so-called “hugging machine,” originally conceived by renowned autism advocate Temple Grandin, has been dubbed OrbisBox by manufacturer Gloria Mundi Care.

The device allows users to lie on their front, side or back while being squeezed by foam-covered panels inside the box. These panels gently close in on the user at adjustable pressure levels. The OrbisBox can also provide light and sound therapy via color-changing panels that make up its walls and wired-in Bose speakers.

OrbisBox’s goal is to help a person who has difficulty processing sensory information. Those on the spectrum are often either hypersensitive to sensory stimuli or experience minimal responses to the same information. When someone on the spectrum is overwhelmed by too many senses, it can sometimes result in a sensory overload meltdown. A device like this may help in these situations.

The OrbisBox is on wheels and about the height and width of a refrigerator, with a depth of about 7 feet to accommodate a person lying down. It retails commercially for about $51,400 USD but can be purchased for personal use.

Mighty contributor Lamar Hardwick, who is on the autism spectrum, said the price of the machine would deter people from using it.

“The cost alone would limit the number of autistic people who may benefit from its use because it will alienate an entire economic class from having access to it,” Hardwick said.

He also expressed concern about the efficacy of the OrbisBox in actually comforting users.

“The ability to control the machine takes away one of the most important aspects of ‘stimming,'” Hardwick said. “In theory, self-stimulation by individuals with autism works because it is self-regulating. With little to no actual control over the function of the machine, I’m concerned that the results will fall short.”

The Mighty wants to know: Would you try the OrbisBox? Explain why or why not in the comment section below.

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When a Man at the Waterfront Stopped Me During My Children's Meltdowns

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I wish I could tell you it’s all wine and roses — that your kids are always going to be on their best behavior every time you go out and will be perfect little angels at home.

But oh, would I be a liar.

Meltdowns in our family can last anywhere from 20 minutes to two hours, and they are not always at home. They can happen anywhere, and in their wake I usually feel defeated. I feel like I’ve completely failed my kiddos because no matter what I did, it wasn’t good enough, even though I tried. I don’t like to talk much about these events, especially the public ones, because they are a stinging reminder of just how hard my kiddos really have it and just how cruel the scrutinizing world can be.

But some stories are worth repeating because some have a happy ending.

It was nearing the end of April vacation, and the kiddos were getting restless. I decided to take them for a walk on the waterfront one unusually warm day just to break up the monotony and get them out of the house. Naturally, the walk wasn’t without incident, but I had expected as much and soldiered on. Once we got to the main drag, they saw an ice cream restaurant and insisted we go over. The line was around the corner when they plunked themselves down at a table, and I knew then this wasn’t going to end well. There was no way they were going to be able to wait that long. I made the crucial mistake then of telling them the line was too long and we’d have to try again another time.

Both experienced a meltdown. We had reached a crosswalk and now that I had one child in my arms, the other was on the ground. Both were still wailing and I could feel myself losing it when I was approached.

A gentleman, probably not much older than me, stopped me before we crossed.

“Excuse me, I couldn’t help but notice you were struggling. Do you need help? I have a little guy of my own, but if there’s anything I can do…?”

I was flabbergasted. Most people would scowl or scold me and tell me to get my kids under control, and here this man was, acknowledging the difficulty of my situation and still offering to help. I choked back the tears of gratitude and thanked him. I politely refused because we still had a long walk back to the car. That’s when he put his hand on my shoulder and said the best thing you can say to a mama of children on the autism spectrum. The one thing I needed to hear and will never forget:

“You’re doing a great job, Mom.”

I nearly burst into tears at his kindness. I nodded my thanks, and we parted ways. The meltdowns continued all the way back to the car and all the way home. Once we were home and both children had parted ways into their respective rooms to calm down, I made myself a cup of Earl Grey and reflected on what he said to me. It made me feel validated. It squashed those feelings of failure and defeat and restored my faith not only in myself but in the world again.

So to you, kind sir, I want to say thank you. Thank you for your understanding and your empathy. It means more than you’ll ever know!

The Mighty is asking the following: Share with us an unexpected act of kindness, big or small, that you’ve experienced or witnessed in an everyday place. Check out our Submit a Story page for more about our submission guidelines.

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My Life as a Social Butterfly as a Person on the Autism Spectrum

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When people hear I am on the autism spectrum, a lot of them expect me to be socially withdrawn. After they connect with me further, they tell me my social skills are amazing. 

But being a social butterfly as someone on the autism spectrum isn’t nearly as easy for me as it looks. I have a strong desire to be around others. Yet if I spend too much time with people, I get to a point where I’m so exhausted from constantly thinking about my social skills that I can’t function. And if there are too many people (three is a crowd for me), I will get overwhelmed.

It’s also difficult when I slip up and don’t realize I’ve been rude. People either need to tell me I’ve been rude (and I’ll feel bad about it, but at least I can apologize), or they will get upset with me and not say a word, and I’ll figure it out weeks, months or even years later.

I love to talk with people. But unless I know someone very well, I avoid using the phone to speak with them. I can’t see them, so the few skills I have in reading facial expressions are useless. I definitely struggle with hearing differences in tone of voice or recognizing what they mean. And sometimes, I can’t understand or process what the person has said fast enough to respond. In fact, I have found that if I’m going to speak on the phone with someone, I usually need to write out a script for myself. Overall, it’s much easier for me to text, chat or email. This way, I have more time to process what has been said and think of how to respond.

It’s taken a lot of time and energy to understand social skills. It’s not always easy for me to be around others as someone on the autism spectrum. It’s certainly frustrating at times. And yet, I’m a total social butterfly. There’s no doubt about that!

Imagine someone Googling how to help you cope with your (or a loved one’s) diagnosis. Write the article you’d want them to find. If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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How Cats Helped Me as a Person on the Autism Spectrum

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Last October, my family had to make the heartbreaking decision to put down one of our cats. He was 15, and his health had taken a sudden and dramatic decline, but it was still extremely hard. If you’ve ever lost a pet, you know the pain. But it’s impossible to explain to someone who hasn’t experienced it. This cat in particular, Charlie Brown, had been with me since I was 8 years old. And he’d helped me through a lot in those years.

You see, when we adopted him, I was going through what would turn out to be probably the hardest period of my life. I was struggling in school, somewhat academically, but mainly socially. I had very few friends and plenty of people who disliked me.

I hate to use the word “bully,” but I was bullied during this point. I hated going to school more than anything. While I never lied, I’d use any excuse to avoid school. A tiny sore throat? I need to stay home. What if it’s strep? Stubbed my toe? Well, it may be broken, and I should stay home. It felt like whatever I did would make someone upset. I got into trouble constantly, but I’d often have a meltdown when disciplined. I wasn’t diagnosed with Asperger’s at the time, so this just made me look more rebellious. It was a very painful time.

But Charlie helped me in a way humans couldn’t. Just like me, he wasn’t aware of those subtle social cues. He wasn’t aware of the nuances that were so foreign to me. He, and the other cats we had at the time, didn’t understand any of that. They just knew that I loved them. And because of that, they loved me. 

When I was upset, they provided me the support I desperately needed but couldn’t get anywhere else. Charlie, in particular, was a very sensitive cat. He always knew when you were upset, and he’d do whatever it took to make you feel better. Your frustration became his, and he would do everything in his fluffy power to fix it.

I think cats helped me socially as well. From a young age (I’ve had cats in my life since I was born), I understood how important body language is in cats. Cats couldn’t say when they were upset, so I became very good at reading them. I ended up understanding a cat’s body language long before human body language. In fact, I still think of myself as a bit of an expert on a cat’s body language. It took a lot longer to understand human body language, and, at times, I’m still learning. But knowing how important body language is to cats helped me apply it to people.

I think I just relate to cats for a lot of reasons. One being that cats are often misunderstood. They’re not as openly affectionate as dogs, but that doesn’t mean they don’t love you. They just show it in their own time.

They also like the security of a schedule, much like myself. They’re sensitive to loud noises and can get overwhelmed easily. When they do get overstimulated, they can lash out. It’s a familiar scenario to most cat owners: You’re petting your cat, they’re all purry and lovely — and then bam. Your cat clamps down hard on your hand with their teeth. It may seem like they’re simply being mean, but that’s not it. They, like me, get overwhelmed and overstimulated. It’s almost like a kitty meltdown. They can’t tell you to stop, so they react in a way to make sure you do, which is something I did as a child.

I spent a great deal of my childhood pretending to be a cat. There were plenty of times my parents would take me to the mall or the movies and suddenly lose sight of me, only to find me crawling around the floor and meowing. It was so calming to pretend to be a cat. It brought me into a world I understood and felt safe in.

Some people think animals, especially cats, are so complicated and “unpredictable.” I can’t even begin to comprehend that. Cats are so much simpler, and they’re very predictable if you take the time to get to know them. They’re a welcome relief to the confusion and frustration of people. They don’t have ulterior motives, they won’t talk behind your back and they won’t care if you have no human friends.

They also don’t blindly love you like dogs. You need to earn a cat’s love. And when you do, it’s a love like nothing else.

Imagine someone Googling how to help you cope with your (or a loved one’s) diagnosis. Write the article you’d want them to find. If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

Sarah Bartkowski’s cat, Charlie Brown, is pictured at the top.

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