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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Talking With My Son About His Autism

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Jake in Costa Rica “Just as no two snowflakes are the same and everyone has a unique set of fingerprints, there are shades of autism,” I tell my 12-year-old son.

The older he gets, the more aware he has become of others who hold the same diagnosis he does.

“Mom, this boy at tutoring is weird. He does stuff without asking the teachers. He just gets up and starts going through their things.”

I nod and say little, knowing what is coming next. My eyes on the road.

“He has autism like me. Do I act weird too?”

“Everyone’s autism is different. Remember I explained it’s a spectrum? Think of it like a rainbow. Some people are on one side of the rainbow keeping their eyes out for the pot of gold while others are just starting to lift off from the cloud. In between there are all kinds of travelers.”

He’s quiet as he looks out the window of the car, processing what I said.

“Well, what about that one boy from school? He’s attacked kids, and he has autism. I don’t ever touch anyone else.”

“Yes, I know. Some people get aggressive when they’re feeling overwhelmed.”

I steal myself for the next probing question. I try to keep my answers short and factual; he has a way of cutting through all the bullsh*t, so there’s no point in trying to serve any up.

It’s one of my favorite things about him. The truth is his crutch.

“How do you know I have autism? If my autism is so different than all the kids I see, maybe I don’t have it.”

I grip the wheel tighter, preparing myself for this very important conversation. My son is too smart to answer with anything but the truth. I long for the days when a true but vague answer would buy me time.

“Remember Dr. Kartright?” — referencing the expert who had diagnosed him just two years earlier.

“Yes.”

“Remember all those tests and questions she and you spent the better part of a day working through? Well that test is designed to identify autism. The questions are specific and based upon your answers; her observations and the answers provided by Dad and I, along with your school, she is able to say with certainty that you fall on the autism spectrum.”

The rain sprinkles on my windshield, and the quiet in the car is interrupted from the wipers swishing back and forth, erasing the droplets that just fell. The sun has set, and the darkness is enveloping us; the traffic lights are shining brighter in the
evening sky. He is again quiet, watching the rain fall and as the reminders of
it are swooshed off the glass.

“How did I catch autism?” he asks.

“Well, you don’t catch it like the flu; you are born with it,” I say, grateful he comes to me with these questions instead of burying them deep.

“Why do I have autism and no one else in our family has it?”

“You know how every person is made up of chromosomes, a collection of recessive and dominant genes? Like Dad has black hair and your aunt has blond? Well, it’s just the way the genes are aligned that make every person different, even if they have the same parents. It’s like how you love history and your sister doesn’t. It’s all those differences that make every one of us unique.”

He accepts my response.

Quietly we cross over the intersection, the rain hitting the car louder. My heart is full of ache for my son who is trying so hard to figure out where on the spectrum he falls. It’s a moving target and exponentially difficult to explain to a 12-year-old boy who just wants to understand this world and where he fits in it.

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Superheroes and Sidekicks: Teaching and Learning From My Daughter With Autism

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Over the years, I’ve been exposed to a wide variety of superheroes. My oldest son loved “Justice League”– Flash was his favorite. He had the costume and darted around the house like lightning. The “Justice League” was a team, each doing his or her part to solve the problem — to save the world.

My youngest now loves “Star Wars.” He carries a light saber on his belt loop. He watches light saber videos on YouTube. He says he’s from “the dark side” (watch out). In “Star Wars,” the apprentice learns alongside the master teacher until he is ready to go out on his own.

Sometimes people call moms “superheroes.” And quite frankly, we are. We are master teachers — or at least trying to be. We have apprentices at our side—little “sidekicks.”

I have three “sidekicks” or apprentices. Two of them are becoming more independent every day. They’re soaring and flying in new ways all the time. I love watching them venture out, but I’m there to catch them if they fall, too.

My daughter is 12, but she’s still my sidekick in many ways. Having autism means she gets to be an apprentice a little longer. And that’s OK.

When we go places in public and there are too many people, and she feels scared, I come to her rescue. I help her, I teach her. She stays by my side like a loyal sidekick; she trusts me.

At school she has a 1:1 aide. Her aide is like her master teacher — my daughter is learning the ropes right along side her. Sometimes her aide lets her fly solo, but she’s always there to catch her fall. That’s what superheroes do.

At church youth events, she is my sidekick… for now. She’s venturing into new territory and needs someone to help her learn. I’m happy to be her master teacher. But I know with time, she will rise to a new level.

She’s had the help of superheroes, master teachers, all along the way. Therapists, aides, doctors, friends, siblings, parents. Her own little “Justice League” working alongside her to save the world, to make her world safer.

Superheroes and sidekicks. The master and the apprentice. They work together.

You want to know something, though? Sometimes I don’t feel like the superhero — I think my daughter is. She’s facing the world in a way I can’t possibly understand, and that makes her braver than me. She’s like my master teacher, and she’s my superhero. She’s taught me more than I could possibly teacher her. But I’ll fill in the role of “superhero” until she realizes she’s had superhero powers all along. One day she’s going to fly away and take the lead, and I’ll be the one left behind.

No matter what, we’ll always be a team, and I’ll be there to catch her when she falls.

Follow this journey on The Special Reds.

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Autism Awareness, the Puzzle Piece Symbol and Tattoos

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boy with arm around him that has a tattoo of a puzzle piece
Photo courtesy of Ink4Autism

April 2 is Autism Awareness Day; however, people who advocate for autism awareness like myself, well… we take the whole month of April; and parents of children with autism, like myself… we do it every month, every day. We actually use 365 days a year to spread autism awareness.

Autism spectrum disorder (ASD) is a neurological disorder. Often people with ASD are referred to as being “on the spectrum.” Challenges of ASD vary from person to person.

The puzzle piece is the well known symbol for autism. Over the years, there have been many debates over it. Some advocates argue it implies something is missing from people on the spectrum, or implies they aren’t whole. Gerald Gasson, a parent board member for the National Autistic Society (FKA The Society of Autistic Children) created the symbol in London in 1963. The board viewed autism as a “puzzling” condition… hence the puzzle piece.

I believe it’s up for interpretation.

I, like so many other parents of children with autism, found support online after my daughter’s diagnosis. I found each person had his or her own story to tell, and I quickly realized we all wanted the same thing for our autistic children or loved ones: awareness and acceptance. Not long after arriving in my new community of fellow parents with autistic children, I heard all about one of the biggest autism awareness pages on Facebook, Ink4Autism. This guy was spreading some major awareness, and he inspired me to want to do the same.

Awareness can be done and seen in so many ways: bumper stickers, charity walks, personal blogs (like mine), fundraisers and even tattoos… yes, tattoos.

Autism tattoos take on many forms, from the puzzle piece designs, to a butterfly with puzzle piece wings, I’ve even seen the Superman emblem in puzzle piece design. No tattoo is the same, which is true with autistics. “If you’ve  met one person with autism, you’ve met one person with autism” and my personal favorite mantra, “Different does not mean less!”

I had the pleasure of speaking with Jack Skorochod, founder of Ink4Autism. Jack spreads autism awareness with more than 100,000 followers. Ink4Autism is one of my go-to pages for so many in the autism community; I had to know how and why he started his cause.

This guy looks pretty tough — covered in ink from I’m guessing head to toe. Some may say he is intimidating. In speaking with him, he definitely smashes the stigma that tattoos are just for tough guys. He’s a husband, a father, has a passion for tattoos and a love for his family.

We spoke about his organization and how it came to life:

I’ve always been into tattoos, even at a young age. I’ve always loved the beauty of them. Although, I didn’t get my first tattoo until I was 30 years old. Yeah, but I’ve more than made up for it since then. I have tattoos dedicated to my wife, sons, family, as well as some memorial tattoos. When my son Lincoln was diagnosed with autism at 5 years old, it seemed only natural that I get a tattoo to show respect and honor to his autism.

The idea for Ink4Autism happened in November 2011 when Jack had stopped into one of the many tattoo shops he regularly frequented. It was at this time that he walked into the Lost Anchor Tattoo Parlor while they were running the “Movember” fundraising campaign. Movember is an annual fundraising event where people grow out mustaches to raise awareness for various cancers, like prostate cancer. This shop was doing mustache tattoos with the proceeds being donated to the campaign.

“A lightbulb went off,” Jack told me. “Why not for autism?”

The switch was flipped, and Ink4Autism was born. Even with a massive following, Jack is humble, and the passion he has for his cause shines through. He is a true advocate. He told me:

My first year I managed to get 18 shops in the U.S. and here in Canada to take part. Some were friends of mine, others were shop owners that I had found online that had already done some fundraising events at their shops, so I knew they would be open to helping out for autism, and thanks to social media, other shop owners found out about it and they contacted me to join and support the cause. People would find out about it through our Facebook page, and they would tell their artist friends about it. By the second year I had about 75 shops and had added Australia and the United Kingdom to the list, and it has continued to grow each year.

Since 2012, I4A has been helping spread autism awareness on a permanent level. During the month of April, you can go into a participating shop to get an autism-themed tattoo, and the funds are donated to numerous autism charities. Tattoo shops in 11 different countries around the world have participated in this campaign, and since 2012 Ink4Autism raised more than $80,000 for autism services.

Jack told me:

Our autism tattoos act as a permanent showing of love for those with autism in our lives. We are smashing the stigma that tattoos are for thugs, and we are raising awareness for autism at the same time. I will proudly display that inked love until the day I die. I love hearing the stories of people who never would think about getting a tattoo, and they are getting an autism tattoo to support their loved ones with autism, and to me the most touching tattoos are the sibling pieces. As a dad, watching that kind of support from a sibling is incredible, something I get to witness every day with my own kids.

I personally love the puzzle piece, and I don’t agree that it implies something is missing from my child; my daughter was the missing piece to my life’s giant puzzle, and now I have my lost piece.

I asked Jack what the puzzle piece symbol meant to him and this was his answer:

I see the puzzle piece as the mystery of autism. It’s just one of the parts that make up my son. I know others don’t see it that way, and it’s all right to have someone see something differently than I do… and neither of us is wrong because we are all on the same path.

Yes, we all want awareness, acceptance, and inclusion for all… and a tattoo. I think I really want a tattoo now.

Follow this journey on the Facebook page Life With Zoey.

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