What It's Like to Deal With Eating Issues as Someone on the Autism Spectrum

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Some people say that when a person is hungry enough, they will eat. But this statement is not true for me. I am on the autism spectrum myself, and I have had an issue with healthy eating habits my whole life. I take a multi-vitamin daily. But I also try to find healthy foods that taste good. For example, breakfast drink powders, or juice instead of soda. Also, I’ve noticed that the more I’m around food that is cooking, and the more I smell the food, the more I’m willing to try eating it. However, when I’m stressed out, I find it very difficult (sometimes impossible) to eat. It’s easier to sip a drink than it is to chew and swallow an entire meal. It literally hurts to put food in my mouth at these times. Both my mouth and my stomach hurt. My jaw tenses up, along with the rest of my body. And if I try to swallow, I may gag or even throw up.

I was definitely more restricted as a child. As I have gotten older, I find I have tried more foods — but it has been a very slow process. As I said before, when people cook foods I know I’m not going to be forced to eat, I’m much more willing to try them because I smell the foods cooking around me. However, forcing me to eat foods is a very traumatizing experience. I would honestly rather not eat than eat foods that I don’t like. I have nearly passed out because of that. No, I don’t like feeling that way. But it’s still better than putting foods in my mouth that I don’t like.

It’s not that I don’t want to eat healthier foods. It’s that it can hurt to do so. Forcing me to eat something that hurts me is only going to traumatize my eating experiences and make me want to eat less. Again, as strange as it sounds and as hard as it is to believe or relate to, I’d rather pass out from hunger than eat something that hurts me to eat it.

What helps me is to have people always offer foods and cook foods that are better options (but not the only option!) just in case. One day I may surprise you and ask for a bite! But I appreciate so much that my parents respect the fact that I literally can’t eat some foods.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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5 Reasons 50 Cent Is Only Half of the Problem

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By now most people have probably heard about the recent video involving 40-year-old rapper, actor and media mogul Curtis “50 Cent” Jackson and his public treatment of a 19-year-old airport worker with autism spectrum disorder (ASD). Let me start by saying what he did is absolutely deplorable. With that being said, as an adult diagnosed with ASD, I believe that as a result of this incident we have an opportunity to address a larger issue at hand. Ableism can be defined as the privileging of able-bodiedness, resulting in discrimination or social prejudice against people with disabilities. Ableism characterizes persons as defined by their abilities, and as inferior to the non-disabled.

After watching the video of Jackson harassing the young autistic man several times, I identified five ways that our society, like Jackson, is complicit in acts of ableism.

1. Duration of the video: The length of the video was exactly 25 seconds. Twenty-five seconds. We live in a Snapchat, sound byte, satire-shaped social media system that creates the perfect scenario for ableist attitudes to surface. That’s the problem with ableism; it comes with the privilege to present cropped and edited images of disabled people without their consent. Abelism doesn’t care about the causes and conditions that make people different. Abelism is only concerned with highlighting the many ways that disabled people don’t measure up to stereotypical social norms often defined by abled bodies and minds. How many times have we all succumbed to the social media culture that promotes the type of privilege that doesn’t require us to know the whole story, or better yet the whole person, that we have decided to judge? Ableism is subtle but it is real. The next time you feel the urge to judge someone within seconds of observing them or their behavior, try asking questions instead of assuming. If nothing else, it communicates concern as well as creates opportunities for education and awareness.

2. Dialogue in the video: Actually there is no dialogue in the 25-second video, and that’s the problem. The entire video only contains one voice. That is ableism at its core. Rapper 50 cent is the only one talking in the video as we can visibly see the young man shaking his head, likely suggesting that he did not consent nor was he interested in communicating with the rapper. Ableism is powerful because it presupposes that those who are able-bodied are the only voices needed to have discussions about those with disabilities. I don’t know Mr. Jackson’s educational background, but I am almost certain that he has no background in medicine. His assumption that he could diagnose this young autistic man’s “problem” is a part of the power of ableist culture. Often times, ableism rears its ugly head by silencing the voices of those who actually live with disabilities, because those voices aren’t needed in order for society to make recommendations about how they should behave in order to fit in. “Nothing about us without us” is a mantra subscribed to by many disability advocates for this very reason. How many times has our society assumed to speak for and about disabled persons without actually speaking to or with them?

3. Derogatory language: The video is only 25 seconds, however in those 25 seconds there are exactly three expletives. In 25 seconds, the rapper manages to use three four-letter words in his interaction with a young autistic man trying to do his job. His use of foul language isn’t actually shocking, especially if you have ever heard any of his music. What’s troubling about the language he uses is that he uses one word three times that is more damaging than foul language because it is framing language. Three times in the 25-second video, he refers to the young man as “crazy.” This is troubling and ableist language because while he uses expletives in his attempt to describe what he believed the young man had done (taking drugs), he uses even more insensitive language to describe who he thinks the young man is (“crazy”). An ableist culture feeds on the use of derogatory language because the power to define is the power to assign value. Our society freely uses words like “crazy,” “stupid,” and the R-word as ways to assign a negative value to something or someone we disapprove of and/or dislike.

4. Defining by “deficits”: Autism comes with challenges. Social anxiety is real, and while it can be expressed differently in different people, I feel it can at times present itself as a real “deficit” for those on the autism spectrum. The problem with ableism is that it seeks only to define people with disabilities as the disability itself. Ableism causes us to focus on what appears to be the only thing important about this young man, his autism. He is a person working, living, thriving and contributing to society. He is not just a kid with autism, and therefore he shouldn’t be defined just by what may appear to be a “deficit.” Watching the video of him shaking his head back and forth might suggest that he doesn’t want the attention, he just wants to live his life. Ableism can sometimes make life difficult for persons with disabilities because it brings unwanted attention to the disability and in doing so completely ignores the person.

5. Demonizing those with disabilities: The video also captures one of the most unfortunate consequences of ableist culture, demonizing the disabled. While Mr. Jackson has reportedly issued a public apology, stating it was not his intention to offend the young man, the harsh reality is that it did offend him and I find it is very difficult to insist the intention was to produce a different outcome. Curtis Jackson decided to approach the young man, publicly humiliate him and broadcast the bullying incident for the entire world to view. One of the most damaging elements of bullying and ableism is to make the public believe that the victim deserves the treatment they’ve received. When Mr. Jackson insists that the young man is part of a generation that is “crazy” he makes it appear as though the young man deserved to be publicly humiliated. It is the demonization of the young man as some sort of delinquent that made him believe that it was OK to be disrespectful and demeaning. In many ways, our society and culture cooperates with this behavior by presenting images of disabled people as “burdens” and barriers to the health and happiness of able-bodied people in society. When people with disabilities are viewed as a part of society’s problems, it demonizes them and demonstrates the power of ableist culture and language in the world we live in.

My hope is that while Andrew Farrell and his family continue to heal from this horrible ordeal, we as a society take time to use this as an opportunity not just to demand an apology from 50 Cent, but to become more determined to understand all of the ways that ableism has impacted our culture and to make adjustments to those attitudes by first looking within ourselves.

 A version of this port originally appeared on Autism Pastor.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Keith Hinkle

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The Out-of-the-Box Way Teachers Helped My Son With Autism Open Up

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My son Jonathan’s first experiences at school were difficult. The kids at school either ignored him or bullied him, and the teachers at this particular school just didn’t work well with students who learned differently. Though he wasn’t diagnosed with autism at the time, we could see he was struggling to keep up with his peers, both socially and academically.

He was smart and loved to learn, so we knew it wasn’t him. We just had him in the wrong school. He was funny and delightfully quirky, so we knew we had him in the wrong social environment.

Luckily, we found a real out-of-the-box school where children engaged in experiential learning. The teachers focused on the “whole” child, their well-being and not just academics. So we eagerly enrolled him for the next school year, feeling excited he’d finally blossom. But he still was anxious and afraid he’d be bullied again, so he just wouldn’t engage.

Jodi Murphy’s son, Jonathan, left, his teacher
Jodi’s son, Jonathan (left), with his teacher.

His teachers came up with a creative idea to see if they could break down his barriers and help him open up. Finally, I had a team on his side who believed in him!

“Every time we see Jonathan, we’d like to give him a bear hug,” his teachers said. “When he comes to class or we see him in the hallway or out on the playground, he’ll get a hug. Would that be OK with you?”

“Let’s give it a try,” I responded, and #ProjectHug was a go!

So did it work?

In his own words, Jonathan said:

“When I first arrived at the school I felt I didn’t fit in. I was very anti-social, introverted and I just didn’t want to do anything. But one of the things that changed me was that every time my teachers saw me they’d say, ‘Jonathan, how ya been, buddy?’ and give me a big bone-crushing hug.

I’d stand still and say, ‘Oh, my God, not again.’ It was uncomfortable, but thanks to all their efforts, I started to get more self-confidence. I started talking to more people. I developed a trust in the teachers and kids at the school.”

Jonathan became more active and involved at school and a few years later earned “Outstanding High School Student of the Year” and the coveted “Stanbridge Award” for being a good role model and leader. He talked about it being the turning point for him during his high school graduation speech. It gave him the confidence to go on to college, perform in theater and become a voice actor. Today, his character voices are in video games, apps, audio stories and even a major California theme park.

Now I’m not saying #ProjectHug would be the thing to do with every child, and I’m sure his teachers would have stopped immediately if it caused Jonathan more anxiety or stress. The point is that for the first time we found a school with teachers who saw nothing but potential. And thanks to their creativity (and hugs) Jonathan soared!

Our family made an interactive children’s book about #ProjectHug — sort of a space adventure to an alien planet (a.k.a. a new school) and you can get it for free at this link.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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To Channing Tatum After His Appearance on Carly Fleischmann's Talk Show

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Dear Channing Tatum,

When I first learned that Carly Fleischmann, a 21-year-old nonverbal woman on the autism spectrum wanted to start a talk show host called “Speechless with Carly Fleischmann,” I was so excited for her. Later, when I heard you were going to be her first guest, I was blown away by you supporting someone as incredible as Carly. Our community loves Carly for her beautiful story and now for what you’ve done to help her with pursuing her dream of being one of the first nonverbal and autistic talk show hosts.

You see, Carly is proving to the world that even if you can’t speak, you can still have something to say. I first learned about Carly’s story when her book Carly’s Voice: Breaking Through Autism came out in the fall of 2012. It left me in awe. Everything from the obstacles she overcame growing up, to reading how she learned to communicate via her computer blew me away. I would later find out about her amazing website called Carly’s Cafe, and it left a permanent mark on me about how wide the spectrum actually is. I too was diagnosed with autism at an early age just like she was.

I can relate to Carly’s story a lot. Without the support of my family, I wouldn’t have been able to overcome a lot of obstacles as an adult with autism today. Their support helped me become one of the first talk show hosts with autism in the country in 2015 when I signed on to join the show “Different is Beautiful” to highlight people who have overcome adversity in our local communities.

As someone who has done interviews for almost a year now, I can tell you that your interview with Carly was one of the best I’ve seen. The exchange you two had was amazing. You were so authentic and even faced some of your fears during the interview. It made me learn more about your story, but also showed me how bright a future Carly has as a talk show host.

I hope if you ever read this letter you know the impact you’ve made on Carly and on our community by being one of her first guests. We can only hope that Carly continues her path and follows the amazing dreams she has set out for herself.

Your friend,

Kerry

Watch the full interview here:

A version of this post originally appeared on Kerrymagro.com.

The Mighty is asking the following: Share a powerful moment you or a loved one has had with a public figure. Or, write a letter to a public figure who you feel has helped you or a loved one through his or her work. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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We Need to Listen to -- and Believe -- Our Autistic Loved Ones

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So you’ve started dating a girl with autism? So you just found out your son is on the autism spectrum? So you learned all of those times you felt stranded in a world that doesn’t make sense had to do with your “not-so-typical” brain?

You’re lucky you ran into me!

My mom, my brothers, some of my sons and a few of my friends all landed in various places on this broad spectrum.

You are lucky. I’m guessing you know this, but I want to reiterate it anyway. I, myself, took too long to understand it.

The world needs us to have the kinds of conversations that are encouraged by the challenges of autism. I don’t mean to glorify or belittle or romanticize the challenges; they are real and they are hard. But almost all of them are the result of a society that is uncomfortable with “chaos” and “inconvenience.” Only a few of them are actually because of autism itself.

Sadly, I didn’t know this. I assumed my mom and my brothers were asking too
much of themselves and the world, and that the world (when telling them
to stop being themselves) must be right. After all, there is so much more of the world than us! How could it be wrong?

But I had children, and they stimmed, pulled away from certain types of touch, remained nonverbal for a long time.

By the time I was a mom, my brothers had already proven the ever-doubting
world and me wrong, time and time again. My mom had patiently showed me, taught me, believed in me until I learned to know in what ways I was wrong. By the time I was a mom I was ready to step up and explain things to the world.

I started by admitting my own cruelties. That was sometimes hard but always easier than justifying and defending them. Then, I asked the people I love what was going on in their minds and — this is key — I believed them. When my mom and brothers used to try to tell me about their experiences, I mostly entertained them with nods and pats on the head. Secretly I thought they were being dramatic, not trying hard enough or just plain not smart enough to make sense. I could give you specific examples (I have many!) but suffice it to say, I was “nice” on the surface and saw them as “other” on the inside.

But my sons? I couldn’t do it. I had to believe in them and be interested in them and truly listen when they told me things. Whether they communicated by moving away or toward things, or eventually with words.

Because the world looks, smells, feels and tastes different to everyone, and especially for our autistic loved ones, it’s important to trust them to tell us how they feel, what they see, who they are, what they think. It can be hard to understand (my one brother used to complain about all the “poo flakes” flying at him when I asked about his flinching, and my other brother doesn’t have much language so I’ve learned to listen to his energy and motions), but it’s more than worth it. We all become better people when we learn to do this everywhere in our lives.

Because of my brothers, and especially because of my mom (who adopted my wonderful brothers despite everyone telling her they were unlovable), my life is better and my eyes are open in beautiful ways. I’m kinder, smarter and busier sharing wonderful things instead of hiding away from possibilities.

I’ve learned to listen when people take the time to share their experiences, and to believe them. Sounds simple and obvious, right? Yet pay attention. Most of us assume we know what other people should feel, we challenge their experiences by telling them, “That’s not right, that’s not what it is.” We do this easily and consistently, and it’s dangerous and sad.

So you’re lucky you ran into me! Take a deep breath, and when the world looks at you or your son or your girlfriend or the neighbor girl with judgments, anger or pity, try to respond with a kindness and a teaching. Not always, but when you can. I’ve learned to do this (for the most part), and it’s been enlightening! Often people shift when I’m willing to smile and offer a kindness. And when they don’t, I go ahead and give them the benefit of the doubt. Perhaps they thought about it later and will be less judgmental next time. Goodness knows I’ve gone home and thought about things only to grow kinder for the next person!

The weight of the world is not on your shoulders entirely, new friend, so don’t feel obligated to always take the time to teach or encourage a thoughtful reaction, but you have been gifted with a unique opportunity. Take advantage of it in creative and comfortable ways!

You’re new to autism, which means you’ll be interested and curious to learn from others. That’s great! Please know: The professionals will try to be helpful, but listen first to your autistic loved one. The professionals are lovely but not always right. And when they are right, when they do believe in unlimited possibilities and putting the goals and motivators of the autistic individual first, when they do prove their ideas and actions are effective and kind, hold onto them and learn with them. Those gems of support are your best bling.

While you’re here and we’re chit chatting, I want badly to tell you about all the things my mom does that can help. I want to tell you about my book that is a collection of stories starring parenting and autism. I want to tell you to hire my mom, watch her shows, read her books.

And here’s the thing: So many of us are going to tell you that. You will meet so many wonderful well meaning people with the perfect book, the perfect therapy, the perfect vitamin, the perfect-whatever. I suggest you listen to them because they have experience, and you don’t need to figure it all out alone. But always, always, always take time away from their opinions to think about how it resonates for you and your family.

Your beliefs. Your girlfriend. Your son. Your neighbor.

And also, friend, take the time to consider what beliefs or motivators you might have that are, in your own way, hurting your chances for a valuable and successful experience.

It will surprise you sometimes. We are creatures of our environment, and the environment is imperfect. That’s OK, because we are also creatures of power, and you can make changes. Invest in your happiness and agency.

My brothers are now my friends. My sons are my treasures. My mom is my mentor and kindred spirit. My life is diverse and unpredictable and filled with magic and miracles!

Because of my struggles with society and self, I’m able to share these learnings with you and hopefully save you some hardship. I’m able to explore my mistakes and see they are indeed valuable.

I see that it’s also me who’s lucky.

I’m lucky I ran into you.

Thank you, friend, for exploring our luck with me.

The Mighty is asking the following: What is the best advice your mom gave you while growing up with a disease, disability or mental illness? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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To the Moms Who Love Someone on the Autism Spectrum

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To the moms who raise a loved one on the spectrum,

This weekend is Mother’s Day, and I wanted you to know how important you are to your child. You may not know it, but simply by being there for them you are making a huge difference. I know this because when I was growing up with autism my mom helped me through some of the hardest moments in my life…

When I was completely nonverbal (up until I was 2.5), my mom was there.

When I was diagnosed with autism when I was 4, my mom was there.

When educators in my schools couldn’t understand why I was lashing out, my mom was there.

When I started school my mom was there.

When I had to move to three different public schools in four years, my mom was there.

When I came home crying from school for not only being bullied but having difficulty with that transition, my mom was there.

When we fought our school district for two and a half years to get me an out of district placement for students with learning disabilities, my mom was there.

When I needed someone to drive me to school, my mom was there.

When I found my strengths, my mom was there.

When we finally found the therapies that worked best for me, my mom was there.

When I made my first friend and ran home to tell everyone, my mom was there.

When I graduated from grade school, my mom was there.

When I was struggling with taking the SATs, my mom was there.

When I graduated from high school, my mom was there.

When I was nervously waiting for an acceptance letter to come to our house to see if I got into college, my mom was there.

When I graduated with my undergraduate and master’s degrees, my mom was there.

When I received my first full-time job offer, my mom was there.

When I had any self-doubt in my ability to achieve great things, my mom was there.

When I succeeded and overcame the obstacles that challenged me when I was younger, my mom was there.

To the moms out there who love someone with autism, I hope you realize the impact you have, like my mom had on me, simply by being there. 

I love you, Mom!

Wishing all the amazing moms out there in our community a Happy Mother’s Day!

This blog originally appeared on Kerrymagro.com.

The Mighty is asking the following: What’s one thing you want to make sure the special needs mom in your life knows? *If you are the special needs mom, challenge a loved one to respond to this! If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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