What to Keep in Mind If an Autistic Person Is a 'Fussy Eater'

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One thing I don’t intend to do — whether I’m posting on my own blog or other sites — is write much about my children and their behavior.

As an adult-diagnosed autistic woman, the primary goal of writing is to provide a catharsis for myself and to share my experiences with others. When my children are old enough, and independent enough, they’ll be able to choose whether or not to share their own lives with the rest of the world, and I’ll provide support and guidance to help them do so as safely as possible. But in the meantime, I need to respect their privacy and their personhood and avoid abusing my responsibilities as their adult caregiver.

I am, however, still a parent, and that means that at times, like all parents, I can get frustrated by my children’s behavior — no matter how much I might be able to empathize and understand where they’re coming from. Mealtime would be one of those times. Oh yes, we have some battles on our hands.

Many autistic people have issues with food. I am not really one of them. I love food. I see it as one of life’s great sensory pleasures. I enjoy complexities of flavor, color and texture. I can detect in a dish the subtleties of small amounts of ingredients that others don’t notice. I’m fascinated by the way certain flavor combinations really convey the essence of a particular cuisine or culture. I love experimenting with flavors and ingredients in cooking — this is one of the few times I’m truly spontaneous. I love food as a focus for social interaction. (Well, it sure cuts down on the need for small talk.)

The only food-related issue I have is with the texture of meat. I can’t stand it. So I don’t eat it.

If you experience a strong, negative sensory response to something, you tend to want to avoid it.

Until the question was raised about whether one of my children might be autistic, and I started my journey into the world of autism (discovering along the way that I, myself, am autistic), I couldn’t fathom why anyone wouldn’t want to eat. Food is wonderful, and that’s all there is to it.

My research into the condition started to change my view, and I started to think about the problem from a new perspective.

Many autistic people can experience challenges with processing sensory information or input. We get either too much or too little coming at us at once. We lack the ability to “filter” in the same way as neurotypical folks. One of my biggest struggles is with noise.

If I’m tired, it’s the first thing to grind me down. Certain unexpected noises — emergency vehicle sirens or pots and pans crashing off the kitchen draining board — can feel, quite literally, like a sudden and violent physical attack to me. Others — motorbike engines, construction noise and old, poorly-serviced air conditioning units — penetrate and jar my entire body at times when I’m already overwhelmed. And, bless him, my youngest child’s cries (and those of any baby) are always overlaid by a high-pitched, crackling, sibilant distortion that, again, can at times be painful to experience. Ordinarily I love music, but there are times when even this is something I can’t abide.

All of this is why I wear earplugs a lot, why I often have the volume down and the subtitles on when I’m watching television and why I frequently use noise-cancelling headphones at work.

Different autistic people have different sensory challenges.

And I thought to myself:

Imagine if, at least three times a day, I was required to sit still and endure, nonstop, a repeated series of ambulance sirens, pot-and-pan crashes and motor vehicle engine revs. Noises so loud and intense they felt painful. And I would not be able to leave this situation until another person told me they thought I’d had enough.

What if food did the same thing to me that noises do?

If the above example doesn’t resonate with you, think of anything that causes you extreme pain or discomfort. Would you want to sit still and endure it at least three times a day until someone else told you you’d had enough?

When I’m overloaded or overwhelmed, I want to scream, shout, flail my arms, protest or simply get up and leave. Fight or flight. Negative sensory input — and, in particular, noise — is usually the “last straw” for me; merely the culmination of a series of overwhelming events that have built up over time. It’s not just the noise; it’s the noise plus all the other stuff that came first.

And it’s the same for an autistic person who faces challenges with food. When you’re exhausted and already had a day of feeling overwhelmed, to come home and be assaulted by the pain of different textures in your mouth, the overpowering, assaulting stimulus of flavors that always seem too strong and the visual discordance of certain color combinations on your plate, it can simply get too much. And so you scream, shout, flail your arms, protest or get up and leave.

And, again, if you can’t fathom what either of these situations feel like, imagine being tired and emotionally overwhelmed after a hard day at school or work and then being subjected to a physical attack.

And this happens every day.

Several times a day.

Some kids are fussy eaters. Some adults are fussy eaters. But sometimes, the aversion to food stems from something far deeper. We need to bear this in mind when we’re at the dinner table.

Lead photo source: Thinkstock Images

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How I Stopped Being a Picky Eater as a Person on the Autism Spectrum

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I’m going to discuss my experiences in life when it comes to eating as a person on the autism spectrum.

People with autism can be picky eaters as children or adults. They don’t always like to eat the foods they’re supposed to. Healthy eating is all about the food guide pyramid — carbs, proteins, fats, fruits, vegetables and dairy.

But when I was younger, I loved to eat fast food because I didn’t like leftovers. I would rather go to Burger King or McDonald’s pretty much every day. I also never liked to drink water and loved drinking diet soda every day. I was addicted to diet soda like it was smoking. Sometimes I would have it for only one meal, sometimes two and sometimes even all three!

I didn’t know how to cook, so that was another hard part about my eating habits and why I went out for fast food for most meals. I always liked fried foods at fast food restaurants like chicken nuggets and fries. I also never liked to eat fruits. I got into vegetables as I got older, but it took a while. And I did like food after it was just cooked at home but never the next day. I never liked lunch meat, so lunch was always a hard meal.

Needless to say, my health got bad while doing this. My blood pressure went up, and I was overweight. Fast food also has all those preservatives that aren’t good for you. 

So at one point, I started to exercise again and learned how to cook for myself after I moved out and lost 60 pounds in two years. I used an app on my iPhone to help me lose weight and get healthy. My blood pressure has dropped a lot since I did all this. I also started drinking more water, which helped a lot, too.

I feel much better about myself. I have more energy, and I feel like a new man. If fast food or picky eating in general is a problem for anyone with autism, they’re not alone. It was a tough road for me to overcome this, but it’s not impossible. Everyone has the right to be healthy and so do people with autism.

My advice to you is to start drinking more water with meals. Eat no more than 2,000 calories a day. You can still eat fast food, but just don’t eat it every day and don’t eat it for every meal. Start learning to eat leftovers or look up healthy meals to make for yourself that are simple to make.

If there are certain things you like, go out to buy those things at the store even if you have to go with someone. Exercise more, too. I did it and so can you.

Lead photo source: Thinkstock Images

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What I Want You to See About My Life With Autism

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On Friday, September 9, I woke up without peripheral vision. As I struggled to get our kids ready for school, I silently thought to myself “I can’t see.”

I knew what that meant. It wasn’t a first-time experience. It was an impending migraine. I took my medication and went back to bed, but despite the fact that the medication rids me of my migraines pretty rapidly, I still only managed to leave my bed twice that day.

You see, on Thursday I drove to Birmingham, Alabama, to attend a one-day conference. It was exciting. It was inspiring. I learned a lot. I got a chance to spend time with an extraordinary young man I am mentoring. It was all worth it, but in the back of my mind I knew I would pay the price.

This is the ASD (autism spectrum disorder) I live with.

Social anxiety and sensory processing issues are a huge part of my experience. The way autism affects those who live with it is as vast as the personalities of the people themselves. My life with autism isn’t going to look like the life of the other person you know with autism.

In fact if you’re secretly looking for anything that would indicate I am on the spectrum, I would say that you most likely won’t see anything at all.

Sometimes understanding how autism affects me can only be found in what you don’t see.

Let me explain.

What you don’t see is me leaving my home much beyond work, church, and trips to the gym. You won’t see tons of pictures of me out with family and friends on social media.

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You won’t see me at the football game, or the concert that everyone is going to. You often won’t see me hanging out at the mall or at an amusement park. You won’t always see me at the Memorial Day, Labor Day, or Independence Day cook outs and fireworks shows.

I love all of those events and environments, but the reality I live with is that I am often forced to choose very carefully how I spend my time and my sensory resources.

Perhaps that’s why when you see me I appear to be fine. What you think you see is someone not affected by autism when in reality what you see is someone who has given up dozens of opportunities to leave home so I can be seen in the few places you always see me.

What you don’t see is how much I prepare and how much I pray.

Preparation and prayer for most people is something they do when they take an exam.

Preparation and prayer for me is what I have to do just to exit my home.

Every day I spend hours preparing to encounter a world that my brain isn’t built for, and I pray for the grace, courage, and strength to manage it successfully. 

When you see that I’m doing fine just know that fine is a short distance between not being able to get out of bed on a Friday and being able to speak in front of hundreds of people on Sunday morning.

Fine is a short distance between failure and faith and fatigue and focus. Like a smartphone app stuck in refresh mode, my brain is constantly searching for data, taking in the sights, sounds, and smells using up all of my precious data, and the end result is always a drained battery that leaves me with just enough physical energy to climb out of bed to use the restroom.

That’s what you don’t see, but let me tell you what you do see.

What you see is a warrior. Despite my difficulties with sensory processing and social anxiety what you don’t see is someone who is weak. I am strong. I am a fighter. I am a gladiator.

Like the athletes who grace the gridiron on Saturdays and Sundays playing the great sport of football, my life is the perfect blend between beauty and brutality and between grace and grit.

What you see is a gift given to me by God. A gift to persevere. A gift to overcome. A gift to inspire. What you see is a talent for transforming life’s toughest moments into life’s most teachable moments.

My life on the spectrum showcases the strength of the human spirit. My challenges haven’t defined me but rather I have publicly defied the odds that have been stacked against me.

What you see is God using the stage of my struggles as a platform to showcase a divine strength. A strength that is so other worldly that it actually makes my life look easy.

What you see is the grace to learn how to be less of a taker and more of a giver.

Life on the spectrum may have taken parts of me but rather than responding by becoming a victim and a taker it has motivated me not to take things for granted but to take chances, take risks, take opportunities, take charge, and to take a stand, and by taking these things I have in return been given the grace to give the world the best of me.

To all of my awesome autism warriors, keep fighting the good fight. We see you!

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When a Mom in a Parking Lot Tapped Me on the Shoulder After My Child's Meltdown

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I must admit that I used to be snooty. Oh, not outwardly, I mean my friends would never have described me as such, but in contrast to today, I was snooty. I looked at parents in stores with small children having temper tantrums, and I would think to myself, Boy am I glad my kids don’t behave that way! Then I had my fourth child, Katie (I call her Katie Bird). She is 8 years old and the apple of my eye.  She is extremely intelligent, hyperlexic (can read on a college level with pretty good comprehension), and can name characteristics of most every animal in the wild. Katie was diagnosed with autism just before her third birthday.

One busy Saturday afternoon two years ago, I took Katie with me to our local Costco for a relatively easy trip. At this point, she still liked to ride inside the big part of the cart. Then we reached the aisle that had toys – that was all she wrote. I refused to give her the stuffed animal she was screaming for.  So I immediately took the items in my cart to the checkout that thankfully wasn’t too long, and made it through with some crying and screaming. As she calmed down slightly, I decided to stop at the customer service counter to do some quick business there. While interacting with the clerk, she had a meltdown. I remember thinking to myself that this shouldn’t take long, and we’d be out of there quickly. But the clerk stepped away a little longer than expected, and then took longer on the computer, then took a phone call, etc… The meltdown grew. People were staring, muttering not-so-niceties, and some were even leaving the line. I was actually starting to sweat, all the while trying to rub a fast-kicking leg of a 6-year-old in severe mental anguish and distress with a calming tone of voice, saying, “It’s OK, Katie Bird, we’ll be done in a minute and we’ll go home and get your guys.” We call her stuffed animals “guys.”

As the business finally concluded at the customer service counter, I made my usual apologies to the clerk, and started pushing the cart out the front door. As I was walking up to the gentleman who checks your receipt, he simply waved me on which at first I thought was nice… until he started clapping. And the clapping didn’t stop until after all the laughing started behind me. I was humiliated! I finally made it to my car and opened the side door to the van, picked Katie up from the cart and put her in her seat and started to belt her in when I felt a tap on my shoulder… Oh, here it comes, I thought… It’s a holier-than-thou parent to tell me off! So I spun around to find a small, young, smiling woman, holding her son’s hand.

She simply said, “Hi, what’s your name?” I sighed and said, “Julie”, and then started to blurt out that my daughter was autistic, but this woman put a hand on my arm and said, “I know, I know, it’s OK.” She went on to tell me that her nephew is also autistic, and that she thought I had done such a wonderful job inside the store with my child that she wanted to come tell me. Tears started running down my face as I muttered my thanks, and then she asked if she could say a prayer with me. She put both hands on my shoulders and started to pray as I silently wept. She told me her name, and then she was off as quickly as she had arrived.

I don’t remember her name, but I will always remember my little angel that day because she truly turned me from thinking everyone in the whole world was mean to thinking that there are some really good people out there, and sometimes you just need to be receptive to other’s help and prayers. I now pay attention to struggling moms in stores and ask them if there’s anything I can do to help — because it’s not the help, but just knowing that someone else can empathize with what you are going through and that you’re not alone.

As a side note, I did call the Costco manager to speak with him about the employee at the door. I asked that he not be fired, but counseled on autism spectrum disorder, and that not all screaming children are just “spoiled” by “indulgent parents.”

Image via Wikimedia Commons

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To the Woman Who Gave Me Something to Strive for as a Person on the Autism Spectrum

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Quite a few years ago, before online movie streaming, there was a place some folks may remember as the video rental store. I went there quite a few times, picking up some of my favorite movies that I would watch to escape from the world.

I loved looking through the return slot outside and trying to watch the movies disappear when I brought them back. The people who worked there were extra special. They were fun, kind and understanding. And this was before I was even diagnosed as being on the autism spectrum.

One day, my mom came home from renting a movie. I met her in the driveway as she got out of the car. We started having an everyday conversation, and then she stopped.

“By the way, I wanted to tell you that as I was going to pay for the movie, the young woman behind the counter was talking about you,” she said. “She looked at me and said that you are going to go far in life. I said back to her that I thought so, too. But she responded by saying no. She said she knows you will go far. I just thought you should hear that.”

At the time, I didn’t really understand. It was nice to know that someone believed in me like that. But I didn’t realize how amazing that was. I look back on it now, probably over 10 years later, and I still hear those words clearly. Someone who barely knew me truly believed in me. And every time I faced challenges, I remembered those words again. It gave me something to strive for. I wanted to live up to what she had said. I wanted to go far.

And as someone on the spectrum, I have. I can drive. I am independent. I’m an author and a public speaker. I even volunteer my time to help others. These have been huge accomplishments for me.

So, to the woman at the video rental store, I want to thank you. Thank you for believing in me when I didn’t really know what to believe. Thank you for seeing me for the person I am, and for reminding me how capable I am. I hope that I’ve lived up to your expectations, and that I continue to do so.

Lead photo source: Thinkstock Images

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It's Not About You. It's About Me and My Son.

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It’s not about you, it’s about me and my son.

Please understand I am beyond grateful for the kind gesture of goodwill or wishes you send our way. However there does come a time when I stand up for my son and myself. A time when I say enough is enough. Or a time when I say no thank you, we are fine. While I am sure you have the best of intentions, please know that while I always welcome trying new things, I will always put my family first.

When I don’t accept your invitation to a party, please know it’s not about you, it’s about me. You see, large crowds are tough for us. It takes a lot of strength for my son to take all of the sensory information and process it in a manageable form. At the party, being around food my son cannot eat is tough because it can quickly set off a meltdown. It takes a lot of preparation for such a party. We prepare food for him, and we may even ask to coordinate with you. We may complete his scheduled therapy and medications at alternate times just to be there. Don’t get me wrong, we want to be there, but sometimes we need to say no. We have a lot going on, and our family downtime has become essential.

When I turn down an idea you may have for my son, please know it is not about you, it is about me. I am not trying to be difficult. Please know the idea you recommended makes sense, and the reason I am turning it down probably does not. But I know my son, and I know the idea you have suggested will more than likely not work out the way you see it going. While I want my son to be included more than anything, I need him to be in an environment where he has a fair opportunity to learn the same as every other child.

When I say no to helping you on a certain day, please know it is not about you, it is about me. I was up until midnight last night working and up at 4 this morning with a screaming child. I just cleaned up for the fifth time before noon today. I have dirty dishes in the sink, three therapy appointments today and a child who needs me. I want to come help you and be available, but I also need to take five minutes to breathe and take care of myself.

There was a time when I said yes, when I said yes it was about you and not me. I learned that by taking care of myself I am better able to take care of my family, and part of taking care of myself is saying no.

Image via Thinkstock.

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