12 Things You Should Never Say to Someone With Autism

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I was inspired to write this list after reading 10 Things Autism Parents Don’t Want You to Say on Autism Speaks. When I speak about growing up with autism to different organizations, schools and businesses, it’s often a surprise for people to hear that I’m on the autism spectrum. When I was a kid, I was considered on the severe end of the spectrum, from things such as being nonverbal until I was 2 and a half to having severe sensory integration difficulties and emotional challenges. Almost 25 years later, I’ve been able to turn my disability into an ability through interventions and supports that have led me down the road towards being a motivational speaker.

With that, I wanted to share some things I’ve heard on my journey that I hope you will try to refrain from saying the next time you talk to someone on the autism spectrum.

1. “You don’t look like you have autism.”

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2. “You have autism? I would have never known.”

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3. “Was math always your strongest subject?”

4. “Is your autism similar to that of Rain Man or Temple Grandin?”

5. “I’m sorry.”

6. “But you seem so normal.”

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7. “Really? You can talk though…”

8. “Are you cured from autism because you can talk?”

9. “You’re pulling my leg right?”

10. “You must be very high-functioning”

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11. “Do you take any medicine to help you with your autism?”

12. “What’s it like to have autism?

Whenever someone asks me about that last one, “What’s it like to have autism?” it feels slightly odd because I’m just who I am. Autism is a part of who I am in many ways and my experience will vary completely to the next person you will meet on the spectrum.

To continue the conversation towards acceptance, here are some things you should say to someone with autism:

1. “How are you?”

2. “Want to hang out sometime?”

3. “Can you tell me more about the spectrum of autism?”

4. “What do you like to do in your spare time?”

The list goes on and on, but regardless the conversation and what you say or don’t say, just know that I’m Kerry and that’s exactly who I was meant to be.

Follow this journey on KerryMagro.com.

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To the Mom Whose Child Bit My Daughter at School

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Dear Mom,

I’m not writing this to berate you, judge you or curse you out. I’ve been there so I get it. Honestly, when I was told upon arrival at pick-up that there had been a biting incident and I needed to sign a report, I had assumed my child was the biter. I know when you heard the news that your precious angel had bitten someone, you immediately felt a bit of shock and probably a little guilt. I get it because I’ve felt it, too. I’ve been through numerous discussions over my child’s behavior, and I’ve felt the immediate need to declare that I didn’t teach her to hit other children.

I know you want me to know he doesn’t do this at home and you didn’t teach him this. Not to worry. I know there are many reasons why children bite, but it would be a rare occasion when it’s because they were taught to do it by their parents. I know you aren’t teaching your kid to bite, hit or be aggressive to other kids because that would be weird. This might be the first time it’s happened or maybe it isn’t. I don’t know. I’m sorry if it isn’t an isolated incident because I’m sure you’re trying to figure out what’s going on and you might be feeling a little overwhelmed.

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What I do ask of you is that if it has happened before or continues to happen, please don’t ignore it. Children bite for many reasons, including speech delays, sensory input issues, to get attention or out of frustration. Sometimes kids grow out of it and sometimes they need a little help. Don’t be embarrassed to ask for help if you don’t know how to fix it.

Our little prince and princess were fighting over a red cushion called a Disc’o’Sit, which has been incredibly beneficial for my child and for me. I donated the cushion to the classroom for Bumbi to use when she’s seeking sensory input through bouncing or rocking. It also helps her stay seated for story time and lunch. But it’s bright red and has a cool texture on one side so I get why your kid took an interest in it. Now I’m not saying anything is wrong with your child or that a Disc’o’Sit will solve all your problems. My daughter happened to have a few issues that we continue to work on, but it doesn’t mean yours does, too. It is actually common for kids around the age of 2 to bite, and they usually grow out of it. I’m sure that’s likely the case here.

So cut yourself some slack. I won’t be the mom demanding your child go somewhere else because of this one incident. I promise. And if you need some help or an ear to listen, I’m here. Don’t worry about avoiding me because you’re worried I’m going to unleash the fury of an upset mom on you. I know it isn’t your fault and I know this whole motherhood thing is tough enough without being judged and criticized by other moms.

Here if you need me,

Bumbi’s Mom

Follow this journey on Bumbi’s Mom.

The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? 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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Photos of Special Olympics Fans From All Over the World Prove Love Is Everywhere

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More than 6,500 athletes from 165 different countries headed to Los Angeles for the 2015 World Games this week and with them came fans from all over the world. On Thursday, we attended the Cycling and Open Water Swimming events in Long Beach, California, and met people from all different backgrounds. We wanted to know: What does it mean to be a Special Olympics fan? Here are some of our favorite responses:

1. “It’s good for us as a family to support our athletes. We are proud of them. We are proud because we are Belgian.” — Johan Van Derwelk, Belgium

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2. “I’m a very proud mom. She won the gold yesterday. All her dreams have come true. She said she wanted to make new friends, new memories and win gold, and that’s what she’s done.” — Jacqui Byland (left), England

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3. “We’re here on holiday, so it’s a coincidence we’re here. [The athletes] love to do this, and it’s great fun to see them doing their sport.” — Rick Van Aarle, Holland

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4. “It’s so beautiful.” — Marjanca Lukani (middle), Slovenia

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5. “It’s a blessing to me to be able to encourage someone.” — Ray Thompson, USA (left)

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6. “My daughter Sandy went to [the World Games in] Athens, and she wanted to come to the next one. She won gold in the relay with her three friends. It’s better to celebrate as a team than an individual.” — Norman Freeman, Australia

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7. “I love them for who they are, even if they don’ win. [Watching them], it feels like my heart is going to explode.” — Angela Dorelli, Costa Rica 

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8. “I’ve never seen him as happy as he is here.” — Claire Connell (left), Ireland

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How His Brother With Dup15q Inspired Him to Start Watching Flies Sleep

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Dr. Dindot and Ritter in the lab

Dylan Ritter has spent his summer looking at flies.

In a Texas A&M University lab in College Station, Texas, the 20-year-old has worked overtime and on weekends observing the notoriously annoying bug’s sleep and wake cycles. But he’s not doing this purely for the love of science — he’s working to improve his younger brother’s life.

Travis Ritter, 17, has Dup15q syndrome, a rare chromosomal duplication which often comes with a variety of developmental disabilities and challenges including autism, seizures, hypotonia as well as anxiety and sensory disorders.

Dylan Ritter says he’s played a paternal role to Travis since childhood, stepping in when their parents needed an extra hand. “It really wasn’t a big deal,” he told The Mighty. “It was just something different we had to account for.”

Last year, he took his big brother role to a new level after reading an article that detailed Dr. Scott Dindot’s unique mouse model research on Dup15q. Ritter wanted in — he pitched himself to Dindot in an email and later began working in Dindot’s lab at Texas A&M, where he’s quickly made himself a stand-out researcher.

“Dylan is an amazing person,” Dindot told The Mighty. “[He’s] extremely bright and motivated, fearless, and a genuinely nice person.”

During his summer research, Ritter found flies with Dup15q woke up at abnormal times or that their sleep behaviors would be off depending on when they went to sleep. When he then returned home to New Jersey, he realized a similarity in his brother’s behavior. Travis Ritter typically went to bed at 11:30 p.m. and would wake Dylan Ritter up bright and early at 6 a.m.

“He’s fully awake and ready to go. I’m sitting there like how’s this possible?” Ritter told The Mighty. But then he recalled his research and realized the combination of Travis’ mere six and a half hours of sleep and his hyperactivity might be due to Dup15q syndrome. “It’s really kind of amazing being able to see something like that, having my research correspond to something at home,” Ritter told The Mighty.

Austin, Travis and Dylan Ritter pictured from left to right.

The first time Mike Porath, founder of The Mighty, saw the Ritter brothers together was at a pool party in New Jersey for families in the Dup15q Alliance, an organization that brings people affected by the condition together and promotes research. Porath, whose daughter Annabel had recently been diagnosed with Dup15q, watched closely as Dylan, Travis and Austin Ritter played in the pool together. While dealing with the uncertainty of his daughter’s future, he found comfort in the Ritter siblings’ relationship. On the way home, his wife Sarah brought up that she’d been watching them, too.

“It gave us something to work toward as a family,” Mike Porath said. “We wanted what the Ritter boys have. It’s nice to have clear cut examples that you’re working toward.”

Dylan, Travis and Austin Ritter pictured from left to right.

After he graduates from the University of Mississippi, Dylan Ritter plans on attending medical school, and he hopes to continue researching Dup15q — even if that means being surrounded by flies. He’ll do whatever it takes to promise his brother the best possible life.

“I think [Dylan] is one of a kind,” Dindot told The Mighty, “and what he is doing is perhaps one of the most admirable and inspiring things that I have ever seen.”

 

Correction: A previous version of this article incorrectly stated Dr. Dindot’s lab’s location. His lab is located in College Station, Texas.

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How Asking This Everyday Question — and Meaning It — Could Save Lives

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It’s a question that gets asked frequently and casually by your boss, your coworkers, the lady at the check-out counter and your friends: “How are you doing?”

The How Are You? Project wants you to answer honestly, and won’t stop asking until you do.

Started by seven college students who are interning at MRY, a creative and technology agency, the centerpiece of the project is a 10-hour-long video of one of the founders, Trevor Hains, sitting in a coffee shop.

That’s right, 10 hours. He’s just sitting there, waiting for you tell him how you really are. If you click, “Fine, thanks,” the video starts over. When you’re brave enough to select, “Actually, let’s talk,” you’re taken to the project’s website, where they have information and tips about how to ask the question to a friend who might be having mental health problems.

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“When we first started to think about the topic, all of us immediately went to how much students rely on their friends. We really thought about our everyday interactions,” Carly Harris, one of the founders the How Are You? Project, told The Mighty. “We say, ‘How are you,’ every day, but it’s lost its meaning.”

Although the question is simple, the implications are huge. According to the project’s site, 64 percent of students no longer attending college dropped out because of a mental health reason. While 6 percent of undergraduates and 4 percent of graduates in 4-year colleges have seriously considered attempting suicide, nearly half of each group didn’t tell anyone about it. So when someone answers, “How are you?” with, “Fine,” they might not always be telling the truth.

Heather Ford, founder of the How Are You? Project Georgina Morgan’s close friend, lost a friend to suicide last year — Madison Holleran. Holleran was a track star and student at University of Pennsylvania. Her death was sudden and seemingly without explanation.

“If you looked at her Instagram close to her death, she was having the perfect freshman year,” Ford told The Mighty. “She constantly posted pictures from parties and with her friends at school. They showed someone who was having the greatest time. I don’t really think anyone could see how badly she was struggling.”

The How Are You? Project suggests if you’re worried about a friend, sincerely express your concern in a nonjudgemental and understanding manner. Really listen and then follow up. It’s all about taking the question, “How are you?” seriously. 

“At a very basic level, we want college students to think about how they can change their everyday interactions,” said Harris. “Close friends might not even realize you’re open to talk to them about these issues.”  

You can use #howareyouproject to promise you’ll mean it when you ask, “How are you?”

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Why My Mental Illnesses Aren’t ‘Dirty Laundry’

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Once while sitting in Starbucks, I overheard part of a conversation that left me speechless. I had some time to kill before picking the kids up from preschool and decided to treat myself. It was mid-morning and I, along with the two women sitting at the table next to me, were the only ones in the coffee shop. So naturally, I pretended to scroll through my Facebook news feed while listening in on their conversation.

“Oh honey, you didn’t tell them she has depression did you? You don’t want your dirty laundry getting out.”

“I did tell them. It’s OK. She’s in therapy and is doing well on her meds.”

“Well I guess as long as you’re taking care of it.”

I was floored by this interaction. How dare she call depression dirty laundry? And she’s taking care of it? Like she takes care of the trash? 

It amazes me with as much progress as our society has made, there’s still such a stigma against mental illness — like it’s something we need to be ashamed of. I used to believe that about myself. I have had several diagnoses that would classify me as mentally ill. I have been diagnosed with depression, anxiety, post traumatic stress disorder (PTSD), anorexia, bulimia, drug addiction and alcoholism.

For a long time, I believed these illnesses were bad and something to be ashamed of. Because my brain didn’t work like other people’s brains, I thought there was something wrong with me. Like someone forgot one of the screws or read the directions backwards.

But I am not a mistake. My brain was designed specifically and perfectly just for me. I don’t suffer from an illness. I have been gifted a fuller, richer, more meaningful life because of the experiences I have had. Each one of these special journeys has provided me with a critical piece to this puzzle called life.

Depression has taught me the depth of the human soul. It has shown me I’m extremely sensitive and delicate. I’m keenly aware of the longing I have for connection. I ache to be seen, to be heard and to be understood. I feel pain more intensely and sorrow more deeply.

Depression is my fire. My drive. It’s what reminds me I need to move, I need to take action and I need to engage with people and with life. That I need to show up.

Anxiety has taught me the power of faith. It has forced me to believe in something bigger than myself. It has revealed to me the complexity of the human brain. It has shown me the crippling effects of self-sufficiency. It continues to remind me there’s always a greater plan at work. That all I need to do is trust the process and keep walking.

Anxiety is my reset button. When I’m caught up in fear and my head is spinning out, anxiety reminds me it’s OK to not know. It’s OK to not have all the answers. I don’t have to be in control. That peace and serenity are waiting for me as soon as I decide to let go.

PTSD has taught me the value of a moment. When my body is triggered and freezes up, I’m able to appreciate the faithfulness of time. I’m forced to slow down. To be still. To wait. If I give myself enough time for my brain to catch up with my body, for my brain to remember I’m here, in this moment, instead of back in the trauma, I’m OK.

PTSD is my lifeline. When all else fails, I’m reminded to just be still. To just hold on. That all I have is this moment and in this moment I’m OK.

My eating disorders have taught me the beauty of self-care. They revealed to me the magnificence of the human body. They remind me my body is a temple that needs to be cared for and properly nourished. I’ve learned that food is energy. Food is not comfort, it’s not a reward, it’s not a punishment. Food is sustenance.

My eating disorder recovery is my hope. It’s my restoration. It’s a testament to the resiliency of the human body. It’s my reminder it’s never too late to make a change. To start over. It’s my perseverance.

Addiction is my mirror. It has shown me who I am and what I’m capable of. It has revealed to me the evil that exist in the world. The ugliness that lives in me. It reminds me I have the power to destroy myself and those around me.

Addiction recovery is my world. It’s my passion. It’s my purpose. It’s proof that grace exists. That mercy triumphs. That love wins. Recovery is beauty from ashes. It’s life after death. It’s courage under fire.

Recovery is my daily reminder that I’m a walking, talking, breathing miracle. 

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