A 9-Year-Old on the Autism Spectrum Explains What It's Like to 'Think Outside the Box'

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Today I’m going to share with you what it is like, for me, to “think out of the box.” This is exactly the way I explained it to my mom, and she typed it out word-for-word for me last night while I explained it to her. I asked her to put it on my blog.

Me: “Mom, you know I always think out of the box, but sometimes it’s good and sometimes it’s bad.”

Mom: “Kai, it’s never bad to think outside the box.”

Me: “I know, what I mean is that sometimes I thinks so far outside the box, that it’s like being on right on the edge, and you hold on and hold on until someone pulls you back up.

So pretend your box is a little house. Pretend you’re on the cliff of a mountain, on all sides it’s just square, square, square – and the mountain’s a billion thousand meters high. And you think out of your box.

So pretend the box is your house. You think out of it, like you go out of your box, and the distance from the side of your box to the edge of the mountain is half a ruler space. You walk out of your box, and you’re thinking too much out of the box – you’re walking too near to the edge of the cliff, and then when you think way out of the box, that means you walk so far – further than the half a ruler space, and suddenly you fall down, but luckily you quickly grab the edge of the mountain.

Somebody sees your fingers there (but you don’t know) – this person just climbed the mountain to meet mighty-mighty eagle (me). Luckily that person grabs mighty-mighty eagle’s hands – pretend mighty-mighty eagle has hands. Then you get right back into your small box, and that is like thinking out of the box.

So I’m not saying you must not think out of the box. You must, except you mustn’t think about whatever you’re thinking about outside the box too much because then you can fall off the cliff and nobody is there to help you. Unless of course you have wings.”

Mom: “So how often do you think outside the box?”

Me: “Twice a day at least!”

About Me: I’m Kai and I’m 9 years old. My mom typed this for me because she never allows me to type on her laptop! But this is my story word for word.

Image via Thinkstock.

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10 Words That Describe a Parent of a Child on the Autism Spectrum

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What does it take to be a parent of someone with autism? I’ve been pondering the question lately. (Now that my children are adults, I actually have time for reflection.) I am the parent of two, one with Asperger’s syndrome and the other who’s not on the autism spectrum. Did I raise my children differently? The short answer is: Not really. Both of them have my unconditional love and attention. But I do think that having a child with special needs made me dig deep into my soul’s reservoir and activate the personality traits necessary to help him flourish.

So what are those traits? What words just pop into your mind to describe a parent of a child on the autism spectrum? I asked my autism community on Facebook this question, and the post exploded with responses! Using the community’s input and my own personal opinion, here is my top 10 list:

1. Genuine

Lydia Wayman posted this word. She is a young woman on the autism spectrum, and she encounters parents at her speaking engagements and when she works at an autism resource center. She’s right. Every parent of a child on the autism spectrum I’ve been fortunate to meet in person or online is authentic and genuine. There is no pretense. What you see is what they are. None of us has time to put on airs.

2. Unstoppable

Does the Energizer Bunny come to mind? We don’t have the luxury of slowing down as
we must keep on going and going and going to make sure are kids are receiving the best care and support possible.

3. Over-Caffeinated

Many posted “tired,” “exhausted,” but Rebecca Marcincak’s “over-caffeinated” acknowledges our collective fatigue and the fact that we push through (using whatever means possible). There’s no time to catch up on our sleep because our kids need us. So, double shot of espresso or another strong cup of tea please and I’ll be on my way!

4. Humorous

Life is just so much better when you approach it with a sense of humor. I’ve seen a huge transformation in my son over the years. He used to take everything so seriously, but as he’s matured and gained self-confidence, he pokes fun at life (with a twinkle in his eye) and takes pride in being able to make others laugh.

I also think of Brent Anderson, an adult on the spectrum and popular speaker, who
enjoys sharing his literal mind and his “Unintentional Humor.”

5. Fearless

I’ll bet you never thought of yourself as fearless. I know I didn’t. But I believe we are. There is no manual for raising a child on the autism spectrum. And there isn’t a central information hub for finding resources — therapies, schools, independent living, and employment. It’s up to us to seek those resources out and, often, fight for them.

6. Ever-Vigilant

We never let down our guards. Our ears are tuned to conversations — are they making fun of my child? Our eyes are constantly scanning left and right — is everything OK? Even though he’s an adult and living independently, I’m always aware of what’s happening in my son’s life to make sure he is safe and secure.

7. Selfless

Our children first. Helping others in our autism community second. We’re committed and concerned about the needs of others first before ours.

8. Scared

We try not to worry or think about the future. We’ve all seen the statistics so, yes, we’re scared. But we’re not stopped by our fears, and we all try to take it one day at a time.

9. Brave

The word “warrior” came up several times. I like to imagine myself as the Asgardian warrior, Sif, battling my way through the world to clear a path for my son. Fantasy aside, it’s parents like Sharon Cummings who embody the warrior spirit. She’s just one mom who bravely stepped out her comfort zone to make a difference for her autistic son and the special needs community at large.

10. Awesome!

Just like their children…

So, what words would you include on our list?

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11 Tips for Students With Autism Who Are Entering College

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College can often be a difficult transition for those on the autism spectrum. When I was growing up on autism spectrum, getting into college was my first big dream. Now that I’ve graduated, I’m currently pursuing my doctoral degree.

I wanted to share 11 questions I frequently get asked by from students on the autism spectrum who are pursuing a post-secondary education.

1. As a college student affected by autism, what is one of the main things I need to know?

A big difference between college and high school is that in high school you generally have a structured plan for your accommodations called an individualized education program (IEP). However, in college that no longer exists, so you must advocate to your disability support group on campus to receive your own accommodations

2. What are some accommodations I can receive in my classes?

Individuals on the spectrum receive accommodations only if they register with their disability support group. They will then receive accommodations based on their needs. This can include extended time on tests, tape recorders for classes, individual note takers, etc.

3. Do I have to pay for accommodations?

Under The Americans with Disabilities Act of 1990, colleges are required to provide all learning disabled individuals with “reasonable accommodations.” However, you should check the guidelines in regards to what is and what is not available on your campus.

4. Will faculty or fellow students be informed that I am on the autism spectrum?

Faculty members are not allowed to disclose any information about a student to others without consent from the student. However, students must register as a “disabled student” to receive accommodations, meaning your disability support group would be aware you have a disability. It is then up to you to inform your instructors.

5. Is on-campus living for me?

Accommodations can also factor into your living arrangements on campus. For example, you may have an opportunity to have a single room if needed. Ask if your resident assistant will be made aware of your living situation, since he/she can be of help in an emergency.

6. Will tutoring be available for my courses?

Most colleges provide tutoring for all students, but it’s important to learn about those services early on to see if it is available and if you need additional support.

7. Are there any restrictions on how many courses I can take?

Some disability support groups require you take less courses in your first few semesters of college to make for an easier transition.

8. Is there a club on campus that raises awareness about autism and provides social opportunities for students affected by autism?

Autism Speaks’ college program, Autism Speaks U, works with students across the county to start chapters that raise awareness and funds. Some also establish mentoring programs for students and youth on the autism spectrum. To see if a chapter exists on your campus, visit www.AutismSpeaks.org/U.

9. Will my professors have any previous training in educating individuals affected by autism?

There is no requirement at most college for professors to have education in teaching
individuals with learning disabilities
. You should be prepared to advocate for yourself when a situation deems itself appropriate to do so.

10. Will I be treated differently by fellow students because I have autism?

Like in any other situation where you are around people, there is the possibility of a lack of awareness on their part in dealing with people with learning disabilities. Therefore, spreading awareness is crucial for you and others affected by autism.

11. Is there anything on campus that focuses on post-college plans for individuals affected by autism?

Many colleges have a career program/center that focuses on helping you network with outside companies. You can also look under the Americans with Disabilities Act for information about job accommodations and workshops.

I wish all the incoming students with autism a wonderful college experience! Have fun, study hard and remember each day what you are working to achieve. That’s the key more than anything else to succeed and thrive in college.

In 2015, I contributed a chapter to a book called “College for Students with Disabilities: We Do Belong” that shares the experience of several individuals with disabilities who have successfully navigated a post-secondary education and graduated. You can learn more about the book here.

This post first appeared on KerryMagro.com.

Lead photo source: Thinkstock Images

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Why I Really Struggle With School as Someone on the Autism Spectrum

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As someone on the autism spectrum, school has always been difficult for me. But it’s not due to the fact that I have trouble learning new things. I’m a really fast learner, and I even got an A in my first college class! So when I was talking with some of my friends about my anxiety over going back to school this fall, I can completely understand why they may have thought I was worrying over nothing.

“Don’t be afraid of trying things. You can do it!” they told me.

Yes, I may have the ability to try things. Yet, that’s not why I have been so anxious. And then (after getting some extra help from my dad) I figured out how to explain my issue.

Compare school to driving a car. Yes, I know how to drive, and the car is working. But I’m feeling anxious because I’m not sure if I’m getting closer to the destination or further away from it. I need to find the right road. In fact, sometimes, I don’t even know which direction the destination is in. And even if I pull over to ask for directions, I still feel lost and disoriented.

In other words, my writing may be great and my memory is incredible. The problem is that I need to understand things first. Sometimes, I just don’t know what the lesson was about or if I misunderstood what the teacher said completely. And even when I ask for the teacher to explain it, I still tend to get confused with the answer.

One of my traits of being on the autism spectrum is that I can have literal thinking. I can also have a hard time reading between the lines and applying what I’ve learned in one situation to a different situation. So when I read in a textbook “Nearly 80 percent of Colombia’s people live in this area,” and the teacher later asked, “Where do most of Colombia’s people live?”…I struggled to answer the question. The textbook hadn’t used the word “most.” Looking back, I know now that “80 percent” is another way of saying “most,” but at the time I wasn’t able to make that connection when I needed to.

I got lost.

How can people help? Please be patient with me. It may take more than one explanation before I’m confident I understand the lesson. I may need someone to point me in the right direction occasionally. And sometimes, I might already be going in the right direction but not even know it, so the confirmation helps.

I know I have the ability to do well. I just need to make sure I’m learning the right information.

Image via Thinkstock.

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When Someone Says Your Child With Autism Will 'Eat When He's Hungry'

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Oh vey, if it only were that easy.

Has anyone made a comment when you were trying to feed your child and said, “Oh, don’t worry so much. He will eat when he’s hungry?”

I can relate to this all too well.

Growing up, I was obsessed with bologna sandwiches. Nothing else would compare to the positive feeling I’d get whenever I’d be presented with another bologna sandwich. It wouldn’t matter if it was breakfast, lunch or dinner. That easily became one of my norms around the time I was diagnosed with autism at 4. This is a common characteristic for many on the spectrum.

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It was challenging for me, as it is for many children, to understand I wanted food when I felt hungry. Other children sometimes will want to eat but don’t know when they will be full. These challenges can make for a difficult time trying to get several meals in during one day. For me, trying something other than that precious bologna sandwich would make me lose my appetite completely.

And then there are the sensory issues! People have to remember that children with autism often have sensory issues, and eating involves all five senses (touch, sight, taste, smell and sound). We truly went through the gauntlet early on for a solution when there wasn’t a true blueprint in place for feeding me. My parents tried transitioning me to other foods by including smaller amounts of foods I like, such as bologna, when they did. While this didn’t always work, more options presented to me would help me find more foods I enjoyed later down the line. They also helped me set up times during the day to have each meal to help me with structure.

Although I can truly say my experience may vary compared to the next person with autism you meet, researchers have estimated that over half of all children with an autism spectrum disorder have some sort of challenge with food.

My advice for those parents out there today who have a challenge like this with a loved one is to read and download resources to help guide you through it. I recommend a toolkit called “Exploring Feeding Behavior in Autism: A Guide for Parents.” I’ve often used this toolkit when consulting with parents who have children with autism to understand the “nuts and bolts,” as they say, of feeding issues.

After that, like my parents did for me, find what your child loves to eat, try to set up a schedule each day to set that structure and understand that each one of these children will have different needs, so creating a new blueprint may be necessary.

Today, I love a variety of foods, and I hope one day your child can do the same.

Bon appetite!

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

Image via Thinkstock.

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Why I Chose to Be the Sidekick of My Son on the Autism Spectrum

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I know a lot about electric hand dryers, more than I’ve got any business knowing. I know that the World Dryer Model A features a more comforting decibel than most dryers, despite its mediocre hand-drying capability. You’ll find this one in most fast-food joints and musty playground bathrooms.

I know that the Electric-Aire is small and also a quieter machine. This one is also so-so in the hand-drying department, and you’ll find these in smaller stores kind enough to be equipped with public restrooms.

Then there’s the Excel Dryer. It’s pretty loud and strong for its small size, but it doesn’t hold a candle to the ubiquitous and mighty Xlerator. It flaunts its brawn as a large, round-edged box with a sleek, built-in spout, sporting a tattoo that dares you to “Feel the Power.”

I know all this because it’s my son’s business. Not that he sells them or manufactures them. He did try to order an Xlerator online a few times, for the tidy sum of $500. He’s made it his business to know all there is to know about electric hand dryers, particularly the Xlerator. It’s the windmill to his Don Quixote. He has been terrified and fascinated by it since he was a toddler. He’s 7 now, and whenever we go somewhere new, he needs to know 1) If there’s a public bathroom and 2) What type of hand dryer it has, if any.

To know this, he must inspect the bathrooms. If the bathrooms carry a brand of hand dryer he’s not familiar with, he will stand outside the bathroom until someone washes their hands and uses it. He will tip toe to the door and see how it works, how it sounds. Only then will he resume any planned activity with peace of mind.

When our son was diagnosed with autism spectrum disorder and ADHD, he was already 5. Despite our concerns earlier on, it wasn’t until doctors noticed his repetitive round of questions and short attention span that they caught up to what we were already sensing.

When he was younger, he seemed like a very bright little boy, which he still is today. What we saw as unusual, they saw as cute quirks. Like the fact he needed to own a minimum of 13 tubes of toothpaste at a time. If we got down to 12, we’d need to go shopping. Thankfully, this only happened for about a year from age 3 to 4.

So as a parent, what do you do? Long before he was born, I made it my mission, like all parents, to be there and help him through life until he got the swing of things. So I did the only thing I could do. I became Sancho Panza. Yes, I became my son’s sidekick.

For those who know that Sancho was humoring the Man of La Mancha so he can access the old fool’s gold, you may question the logic of my plan. But you see, just like Sancho, I’m mining for gold in my son’s reasoning, within reason.

My son is no fool. He is smart and imaginative and funny and adorable. He’s friendly and caring and quick, but his mind works differently. The trick is finding out what I can about how his unique reasoning works.

So when his toothpaste supply came down to 10 tubes, I’d call him in. “We’ve only got 10! What do we do?” I’d ask. Then we’d run to the drugstore, where he’d gallop like a man on an important mission, and I’d trot behind him, observing. The tubes of kids’ toothpastes had different characters on them. He’d run out of the one with Thomas the Tank Engine. There was a new one for girls with Disney princesses on them. I, like any good sidekick, would help keep track of what he needed. And when he wasn’t looking, I checked the expiration dates on them to make sure they could all get used in good time. Then he began phasing out on the mission, going from 13 tubes to only two. Now he doesn’t even notice when he’s running out.

In the two years since he was officially diagnosed, we’ve had to catch up quick to advocate for what he needs. With so much time to make up, I choose to let my son be my guide. And so far, it hasn’t failed me. Through our adventures, I’m able to better gauge some of his reasoning to his therapists, his teachers, our family and the rest of the world around us.

Though I haven’t cracked the code on his fascination with hand dryers, it’s helped me understand how he tackles his fears. When he’s outside of the house, he runs like a bat out of hell at the sight of an Xlerator. When he goes home, he watches YouTube videos on how they’re installed, what makes them work, the variety of models. He prepares for another day.

And I follow dutifully by his side, hoping to see that day when he does conquer it or if not, to mine one more piece of gold from him so maybe together we can next time.

This summer we got closer to the dream. He agreed to go to a movie theater and sit through an entire film. There I discovered the holy grail of hand dryers. It’s sleek and efficient and futuristic. I ran to tell him about it. “You’ve got to try it,” I pleaded. “It’s not that loud and dries your hands in 12 seconds. It’s awesome!”

Intrigued, he ran to check it out, with his dad in tow. I paced the floor, eager to find out how it went as he skipped out, looking pretty pleased. “So, wasn’t it cool?” I gushed. “Yeah!” he said. “It’s a Dyson.” One mighty blow for the windmill …

Our new mission: Jeopardy contestants. He memorizes their names, their total wins and days on the game. When they win for long streaks, it’s nuclear devastation when they finally lose. I do my best to console him, and it takes a lot. “Don’t worry, they’ll be back,” I promise. “There’s a Tournament of Champions.” He sniffles and smiles.

Gotta go, time to get the armor and saddle up.

Lead photo source: Thinkstock Images

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