What I Missed During My School Years as a Person on the Autism Spectrum

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I was diagnosed with Asperger’s in my early 30s. In my previous blog, I shared what it was like for me to be different in my earliest years. I would like to go further now and talk about how I felt during my school years.

Kindergarten through second grade were a blur. A fast-moving period of time when I went to school timidly, did well scholastically and arrived home breathlessly happy to be able to play with my close friends.

When I was in third grade, my family moved. I had trouble making new friends. The few sleepovers I attended were confusing and uncomfortable for me. A group of little girls I hardly knew, giggling and talking to each other about things only they seemed to understand. I felt so different from them, like an outsider looking in. I began to read a lot, mostly “Nancy Drew” books, and take long walks in the woods with my dog. My mother let me have my childhood friends over, and that made me so happy.

In fifth grade, I moved again. I didn’t even try to make friends. I was quiet in school, tried to blend into the classroom and be invisible. I sat alone in the cafeteria, played alone at home with my Barbies and read my beloved books.

And then my parents divorced, and another move came. Back to where I started.  In the same apartment complex I grew up. Where my good friends still lived. I was glad to be with them again, and we were wild kids in the evenings, played outside until dark each night.

But the days were hard. Because I was in middle school. And middle school was hell for me. I learned quickly that oral reports were near impossible for me, and I ended up refusing to do them by eighth grade. I flat out refused, red-faced in front of the whole class and the mystified, slightly miffed teachers. My grades were good, I was in all honors classes, but I willingly accepted a zero grade for each oral report I skipped. Gym class was a nightmare as well, a place where kids got picked for teams by their friends (I had none, as my dear friends were in different grades from me, so I got picked last, by kids who openly showed their displeasure at having to pick me). Gym class was also a place where I didn’t perform well, where I ducked at baseballs I was supposed to catch, dodged soccer balls, and basketballs passed my way. I was clumsy and afraid of climbing ropes, and I couldn’t hit a volleyball over the net. The other kids scolded me and scorned me for my efforts or lack of. I came up with every excuse in the book to not attend gym. When I had to, when the teachers made me, I hated every minute of it, and at the end of each class, I walked away full of self-loathing.

We moved again, and my first two years of high school were spent in another state, far from my childhood friends. High school was totally different for me. I found a group of kids I could fit into. They weren’t clicky or popular or athletic. They didn’t care that I was different. And they didn’t converse much about anything, which was great for me, as I generally sucked at following conversations.

They were potheads. And to hang out with them, I had to be one too. So I became one of them. My grades fell quickly. I started to smoke cigarettes. My mother didn’t know what to do about my new don’t-care attitude, but I ignored her. I finally found a place where I fit in. With the misfits. And I was in all my sensory glory, cozy in my new sedated world. As wrong as it all was, I was happy again.

I was later hospitalized for depression, although I certainly didn’t feel depressed. The hospital was depressing for sure. Strange foods I wouldn’t eat, strange people and kids who talked about feelings, and of course, strange medications, which made me feel numb and like a nobody.

I moved again, this time to live with my father. A new high school in my home state. I flat out ignored the other kids in school. I barely passed my classes. I read my books, did my homework and just lived. After some time it all became so unbearable, I dropped out. I was three months shy of graduation. I never went to a concert or a prom or a high school party. Never even wanted to. And I have no regrets about that.

My children sometimes ask me why I didn’t go to college. I always change the subject, redirect them to something easier to talk about. How could I possibly explain all of this to my sweet little ones? The dread I felt each morning before going to a school where I didn’t fit in, the ridicule I faced during my gym classes, the utter boredom of being forced to learn what I did not want to learn, the self-hate I felt as I walked eyes down through a sea of students in a hallway. Not to mention the noise of it all. Echoes of laughing and chatting and yelling in the cafeteria and hallways, slams of lockers and feet stomping by. All those strange faces and eyes that would surround me in school, looking at me, seeing me as different. Oh no, I cannot explain that to them. Not yet. But as my children grow older, wiser and more able to understand these things, I will tell them.

They are both on the spectrum, you see. I homeschool one so she won’t have to know the social difficulties I knew. She loves animals, horses particularly, and I plan to follow through with that interest in hopes of her following a different path than the one I took. A healthier, more self-loving path where she can bond with others her age who share her interests. And for my son, who attends a brick and mortar school, I hope to do the same. Find his interest and allow him to flourish with it.

Thinking back, that’s what I missed. The opportunity to be myself in a setting I flourished in. But I cannot fault my parents, as I still have not found that setting. Perhaps it is in parenting and advocating for my children that I find myself at home and at peace.

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 Share Your Story page for more about our submission guidelines.

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To the Angry Woman at the Park Who Scolded My Nonverbal Son

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Dear mother in the park,

Thank you.

I still think of you occasionally. Our interaction has become something of a turning point for me. I have no doubt you have long since forgotten about me. But I wish to thank you. In a time of uncertainty, you forced me to find a strength I wasn’t sure I had. It shaped me into a better parent and added “advocate” to my repertoire.

The day I met you may not have been your finest hour. I think you must have been having a bad day. Maybe you had never encountered a child with an invisible disability. And I know ignorance can breed discrimination.

There must have been a reason for your behavior. I refuse to be a person who just labels someone inherently “bad.” It is too simple. Human beings exist within the greys.

My eldest son had only recently turned 2. My second son, then a newborn, was sleeping in the stroller. I was juggling three hourly feeds (and all those snacks in between) with a 2-year-old who was self-harming, an extensive autism diagnosis process and a chronic illness of my own. No one was to know that. I was just another exhausted mother at the playground. I was trying to work off the famous 2-year-old energy before dinnertime, looking forward to a couple hours of precious sleep before the night feeds began. Our sons tussled on the slide, both vying for the first turn. We were both on hand. Neither was hurt or bothered. It could have ended there. To be honest, I think it should have. But I wouldn’t remember you if it had.

Your reaction surprised me.

You turned around, addressed my son directly and scolded him. Now, let’s ignore that this was a result of normal toddler behavior and no one was hurt. In fact, your son was already climbing up for the next turn on the slide. Nor am I against other parents telling my sons to knock off bad behavior if it is done right. It takes a village to raise a child, doesn’t it?

This was not done right.

You demanded my son apologize.

When I explained my son couldn’t say sorry because he was completely nonverbal, you responded with a look of disbelief. You attempted to get in his face, requesting he look at you when you were talking to him. It’s not just that I knew he couldn’t do what you asked, I also knew he didn’t have to. It bought out the tiger mother inside of me. You had crossed a line. I’m sure my face darkened.

I got between you and my anxious 2-year-old who was on the brink of a full meltdown, and told you to back the hell off. You were angry. I was angry. This had gotten out of hand very quickly. I picked up my gorgeous little boy and wrapped my arms around him. As he nuzzled into my shoulder, whimpering and overwhelmed, I took a cheap shot. I told you I hoped you never had a child with special needs — you weren’t cut out for it. It’s not something I’m proud of. It was said in the heat of the moment, in anger and protection. Who knows what sort of day you had? Who knows what stressors you were facing behind that face lacking compassion? But I wasn’t feeling particularly empathetic at the time.

mom and son in blue shirt smiling
Rachelle and her son.

It is the next moments that I am proud of. As I walked away, I made a decision. I was not going to give in to the impulse to slink away. My little boy was not going to get his playtime cut short. He had just as much right to be there as any other child. Tears were filling my eyes when another mom showed kindness by giving up the prized swing. As I pushed my son he calmed down, enjoying the movement. You left shortly after.

It wasn’t anyone’s best moment, but it had a lasting effect on me. Ever since, I have been determined that my son’s right to be present, to enjoy and to participate should be enacted. A medical diagnosis did not diminish him as human being. I decided then I would move heaven and Earth to protect those rights. His light would never be diminished by a label.

A year and a half later, I want to thank you. Your lack of compassion forced me to discover my inner advocate. My son is better off for it.

Follow this journey on Rachelle’s blog.

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.

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University of Minnesota Students Design Backpack for Kids With Autism

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Six University of Minnesota students have developed a backpack for children with autism.

The “Nesel Pack” has pockets where weights can be added to function like a weighted vest, helping people with sensory challenges feel a calming pressure, like a bear hug. Military-grade fabric, seams and zippers make it more durable than the average backpack. A personalization window leaves room for an ID card, and clips for sensory tools or toys as well as multiple chest straps provide extra security and comfort. The pack can comfortably fit a 14-inch laptop and iPad.

“We wanted to make a backpack that would be like a security blanket,” Will Radke, Nesel’s chief relations officer, told the Star Tribune.

Liam Craig tried on a backpack designed for children on the autism spectrum by University of Minnesota students Will Radke left and Jake Portra March 3, 2016 in Woodbury, MN. ] Jerry Holt/Jerry.Holt@Startribune.com
Liam Craig tried on a backpack designed for children on the autism spectrum by University of Minnesota students Will Radke left and Jake Portra March 3, 2016 in Woodbury, MN. | Photo by Jerry Holt. Copyright 2016, Star Tribune

Radke, 21, grew up in Milwaukee where his parents hosted foster children for more than a decade. Some of those kids were on the spectrum, “so [Radke] saw firsthand the stress some children can feel in high-commotion situations,” Nesel team member Larry Lorbiecki told The Mighty in an email. When Martha Pietruszewski, the team’s CEO, brought the idea for a backpack for people on the spectrum, Radke immediately saw the value in it. The Carlson School of Management seniors took on the project for an Entrepreneurship in Action class.

The team — which also includes Jake Portra, 22, Cole McCloskey, 22, and Rosebert Altianas, 21 — partnered with Fraser, a company that provides services to children and adults with special needs, and within six months had the first-generation product. After four prototype iterations, they’re now close to a final product. They’ve combined research with feedback from students at Bailey Elementary School in Woodbury, Minnesota, to ensure the pack meets as many people’s needs as possible.

“It is the most heartwarming and rewarding experience to see how the backpack could change a child’s life,” Lorbiecki, 22, told The Mighty, after giving students a test run. “Seeing the smiles on their faces reassures all the hard work we’ve been doing over the past seven months.”

front view of backpack showing multiple straps

backview of backpack showing personalization window side view of backpack

While the Nesel Pack was designed with autism in mind, Lorbiecki says it could benefit any person with sensory perception needs. “Anyone can personalize their backpack to make it an extension of themselves,” he told The Mighty.

On Saturday, March 19, the team is launching its Kickstarter campaign so they can make the packs available to the public. The bag is available for preorder for $115 on the Nesel Pack website. Lorbiecki says the seemingly steep price is justified because the pack should last a solid three years (versus a $20-$30 pack that lasts about a year) and simulates a weighted vest, which can go for $30-$90. For more information, visit the Nesel Pack website.

nesel team standing in snow
The Nesel Pack team

h/t StarTribune

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Adult Shares ‘Deepest, Darkest Secret About Autism’ on Quora

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When a user on Quora.com, a question-and-answer website, asked “What’s the deepest, darkest secret about autism?” only a few responded. The top-voted answer came from an anonymous adult on the autism spectrum:

The full post reads: 

I applaud the parents and family members who have taken their kids to special classes, therapy, intervened at school, and were patient and loving with their autistic kids. As an autistic adult, I know we can be very challenging to deal with, and I think you parents are superheroes. Unfortunately, the darkest secret is that not all autistic kids were lucky enough to have such great parents.

Please note: if you are a parent who is  working to help your child do better in school, deal with their sensory issues, improve their social skills, and protect them from bullying, this post IS NOT about you. You are a hero.

The darkest secret is that not every autistic child is lucky enough to have a family that is patient, nurturing, and kind. Not every autistic child has parents willing to take the time to understand that their children need help understanding social rules, need patience when their children are overwhelmed by their environment, and understanding that their children are not trying to be brats when they have a meltdown. Some autistic kids had parents who never got their children tested because they didn’t want to believe that they had a child who was “different”, never took them to therapy or special classes, and rarely intervened when they were bullied. Some parents even blamed their children for their own bullying: “What did you say to make them want to hurt you?” Some autistic children are abused, neglected, molested, and even killed.

To be fair, not much was known about autism when I was a child, but it seemed like every time I did something wrong, my parents thought I was doing it on purpose, to be dramatic, to be a brat, that I wasn’t trying hard enough. Nothing could be further from the truth. I wanted to make them happy. I hope the increased awareness of autism has changed things for the better, but I suspect that there are still places where there are very few resources for early detection and treatment, or support services for overstressed families.

Another person on the spectrum responded that there is no “deep, dark” secret about autism. “I’m a little weirded out that people think there is,” the user wrote. “We’re not Magical People with a Deeper Understanding Of The Universe. We’re also note broken; there is no deep, dark secret that will cure us. We’re just people. Perhaps people who interact with the world differently than you do, but still just people.”

How would you have answered this question? Let us know in the comments below.
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9 Things That Happen When My Son With Autism and I Do Homework Together

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boy doing homework Homework and Hades both start with the letter H; it’s not a coincidence. Want to take a brief trip to the Underworld and see what all the fuss is about? Well, then stop by our place some weeknight after 7, (homework is never started before 7), when a vague, abstract writing assignment is given to a concrete, literal thinker. Grab Hades’ hand, and take a walk with me to the dark side.

I know for many parents, homework and common core math can be hellish, but, when you add a dash of autism, sprinkle on some anxiety and mix in a little perfectionism, homework burns a wee bit hotter and few come out of the fire unscathed.

Hands down, some of my son Ryan’s most frustrating moments have been during the homework witching hour. When Ryan gets stuck, Hades… I mean homework… is challenging on both of us. Ryan gets frustrated by my inability to get it; I get frustrated by my inability to get him. This often leads to tears (from both of us), yelling (mostly me) and licking our first degree burns for a few hours as we try to recover. I wind up apologizing for losing my patience and making a promise to myself and to him that I will do better, that I will be better. Then a Text Independent Analysis of two vague poems comes home and I find myself burning in the firey flames of Hades and guilt yet again.

It’s bad enough that my brain no longer functions at 100 percent capacity (thank you, college years), but, combine that with my ovaries also functioning at about 50 percent, and my Homework Buddy skills have become even worse than they were five years ago, when communication was even harder for Ryan.

As I read the homework assignment for the third time trying to understand what the hell a Text Dependent Analysis even is, there sits my sweet boy equally as confused as me. Yes, he was in class the day the assignment was given. Yes, he heard the teacher explain the directions multiple times and yes, he even told the teacher he understood the directions, yet, two hours after we began, his paper still doesn’t have his name on it, he is still unable to tell me how or why he is so stuck and I still haven’t been able to reach him. At all. It’s easy to see why in those moments, we both feel like we are trapped in the Underworld.

Homework and Hades both start with the letter H. You don’t want to end up there, but, when you do, you do whatever you can to get out. Fast.

Here are 9 reasons why Hades… I mean Homework… is the H-word in our house:

1. Your kid knows he is different and refuses to tell the teacher he is stuck because “everyone is looking at me” so he sits in class for three days and tells the teacher he is “still thinking” when in reality he has no idea what he is suppose to do. The fear of looking “different” outweighs the desire to attend the end of year honors party.

2. When your child’s thoughts are so rigid, so concrete and so practical, anything outside the realm of reality is too “ridiculous” to waste time on. If in reality, a bear can’t ride a bike, then “How would I know how the bear feels if someone stole his bike when a bear can’t even pedal?” Touche.

3. If you help too much, it’s cheating. If you don’t help enough, you don’t care. It’s a fine line that varies from day to day, subject to subject, mood to mood. Good luck walking it.

4. If touching paper feels like needles in one’s spine, then one will not want to create a collage mobile out of folded pieces of paper. If, however, you try to make the mobile, then that is cheating (see #3), and the mobile is flung at your head. Twice.

5. When history has proven a Hades-like homework pattern and you ask your son if he needs help and he says, “No because we are just going to end up in an argument because usually your ideas are ridiculous,” but, you go in, wearing fireproof clothing and offer to help anyway. As history has foretold, initially, your idea is in fact ridiculous until hour two when it becomes less ridiculous and he cements his theory by the assignment ending in an argument over your “mean tone of voice.” Sigh.

6. When you go online to check grades and see he has dropped a grade or two in every subject after you have been told he “wants to handle it on his own,” and you know you need to let him, but, then lose your cool and scream that he is “Minecraft negligent” (yeah, I created that, feel free to use it)), just open a bottle of wine and come up with your best, least ridiculous idea ever.

7. With such a breakthrough, you know from this time on, you will always have a glass of wine for any and every writing assignment in the future, hoping your ideas aren’t as ridiculous and your temper not as hot. (Wine is available in Hades. Of course it is.)

8. Out of complete frustration, you look at your child who you know has difficulty with communication, and say, in a not-so-nice voice, “You have to learn to communicate with your teachers,” and realize as soon as the words come out of your mouth that you deserve another paper mobile thrown at your head. You quickly apologize and tell him you know communicating is difficult for him as the flames of Hades burn your heart.

9. Recognizing that no matter how burned I feel after the homework hour (or three), that no matter how hard I think it is on me, it is 10 times harder on him. Which is precisely why I keep offering to help time and time again, no matter how ridiculous my ideas may be or how bad my hair gets with the heat in Hades.

I do believe there is a way to rise from the Underworld. It may come just when the fire is as hot as it can be and you believe there is no escape from the heat.

For me, it happened when my son looked at me through tears and said, “My brain feels like it’s on fire because it just doesn’t work that way due to my disability,” and then your own tears begin to fall helping to put out the fire in your own brain. It was in that moment, that the flames turned to embers. It was in that moment that I had to remind myself that no matter how hot the fire feels to me, I must never lose sight that it burns much hotter for my son.

My son looks to me to douse the flames in his brain with patience and understanding, which is why, when in Hades, Mommy sometimes takes a time out from the fire and the Text Dependent Analysis (I still have no idea what that even is) and returns refreshed and calm and sometimes carrying a glass of wine.

He needs me to get the hell out of Hades (Is that redundant?). So I do. That doesn’t mean I won’t occasionally feel the homework flames and start to slip back to the Underworld, but, the pull from my son above ground is stronger, so I grab a fire extinguisher and the wine and Google “text dependent analysis” and we get the job done. The homework binder is then closed… until tomorrow night, but, next time I will do better. I hope.

Follow this journey on The Awenesty of Autism.

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7 Reasons I Wish I Could Be More Like My Son With Autism

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I just made a hotel reservation in Chicago for a family wedding. It’s one of my favorite places. My son Evan isn’t crazy about the Windy City — or any city — because there are too many sirens. During the call, I informed the reservation specialist that my son has autism and requested a room on a higher floor to help minimize street noise. She said she was going to note the request was based on a “child’s medical condition.”

She thought she was doing me a favor by not disclosing Evan’s diagnosis. I asked her to please use the word “autism” so the hotel staff would understand the nature of the request. A “medical condition” sounded vague and didn’t make sense in the context of this request.

I am all about education and raising awareness so people are more understanding of those who are different, and I am not ashamed of Evan’s autism. I am envious of so many aspects of his personality, many of which I think are shaped by his autism. Sometimes I wish I could be more like my son. I have at least seven reasons I wish I could be more like Evan.

1. He is comfortable in his own skin.

When we explained the concept of embarrassment to him, he asked if it hurts when your face turns red. I know embarrassment is a useful emotion. But I’d often be better off without all that worry that comes with embarrassment.

Evan is the kind of person who will dance like nobody’s watching. Plus, he wants everyone watching to join him (which is why he can be the life of the party; see number three).

2. He can spell.

I’d be lost without spellcheck. Evan is my spellcheck. He has an incredible memory that makes spelling a cinch for him. He could easily be the school’s secret weapon in a spelling bee.

Fortunately, I have Evan and a computer with spellcheck. Unfortunately, the computer doesn’t catch every mistake and, as a freelance writer and blogger, there is nothing more embarrassing than a spelling or grammar mistake (except missing a deadline).

3. Evan is a life-of-the-party kind of guy.

He knows how to engage people, and he attempts to interact with others more than anyone I know. For example, he has learned that reading a name tag and then addressing a waitress by her name is a great way to encourage conversation and make someone feel important.

His peers don’t always know what to make of his friendly banter; adults, for the most part, are amused and awed by Evan and his complimentary ways. If you’re a girl with lots of ringlets, expect him to start a conversation with “I love your curls.”

Last summer, on a particularly hot and sunny day, Evan had the majority of our community swimming pool — kids and adults — playing his version of Marco Polo. The game consisted of Evan saying “Marco” and waiting for people to respond appropriately. When they did, they were rewarded with an exuberant “You said it. You won.”

Also last summer, we were at a festival and the bathrooms had no sinks or hand sanitizer. I was too embarrassed to ask for the sanitizer from more than a few moms waiting in the food line with me, but Evan enthusiastically accepted the task by marching up and down the line and asking everyone until he found some.

4. People remember him.

Like Norm on “Cheers,” wherever we go we’re often greeted by a chorus of “Hi, Evan.” The downside of this is it sometimes makes his siblings feel invisible, but on the whole people tend to be drawn toward those who are perceived as fun and outgoing, and Evan can be both with a splash of childhood charm and quirkiness.

Last year he participated with more than 100 other kids in a one-week program that teaches individuals with special needs how to ride a bike. When the director returned this year, the one kid she remembered was Evan because of his outgoing personality.

5. He isn’t afraid of any amusement park ride…

…except the ones that might be dark. Last time we went to Cedar Point, “the Roller Coaster Capital of the World,” it was the first time Evan was tall enough to ride some of the scarier thrill rides and coasters. I did spike his hair (but just a bit) because he was technically a hair (pun intended) shy of 48 inches.

He loved them all. Nothing was too fast, too high or too much of a puke machine for this 9-year-old daredevil.

Watching my son ride roller coasters that scare the living daylights out of me is, well, humbling, to say the least. I couldn’t help but wish I had the guts to ride alongside Evan as he was having the “best day ever.”

6. Small things bring him great joy.

You can see the excitement and enthusiasm in his face. And if you can’t, he’s the first to tell you how much he loves something in a tone that replicates the exuberance of a lottery winner or Heisman Trophy recipient.

How great it must be to experience such pure and spontaneous joy on a daily basis. I find it regularly in the simple things like cuddling my kids or watching them play nicely together. I also experience that level of happiness when I’m enjoying an outdoor activity, attending a baseball game or traveling. But, the difference between me and Evan is that I usually have to consciously think about it, while he just seems to experience it.

boy playing with microphone
Jennifer’s son Evan

7. When he wants to learn or master a new skill, Evan finds the determination and focus to work hard at achieving his goal.

Whatever activity Evan is interested in, he can work at it for hours. Right now it’s gymnastics. He practices handstands, front walkovers, cartwheels and one-handed cartwheels for hours at a time.

I’m jealous he has the ability to work hard at mastering his most sought-after skills. In the past few years I have wanted to learn to play piano, take up violin, write a book and start a blog. One out of four isn’t bad.

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

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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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