Am I Autistic or Do I Have Autism?

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11800578_937292316330919_4795062672357280864_n The National Autistic Society (NAS) has recently conducted a study on what to call people on the spectrum. You can read about it here. There seems to be a lot of debate as to whether one should say, “He or she has autism” or “He or she is autistic.” I’m on the autistic spectrum myself, and people have sometimes asked me, “Do you want me to say you’re autistic or do you want me to say that you have autism?” I decided it might be a good idea for me to write an article about my views.

There are many people (mainly neurotypicals) who say you shouldn’t describe someone as “autistic.” It’s better to say they “have autism.” Some say the term “autistic” is offensive, that it defines a person and that it means they’re nothing more than their autism.

Personally, I don’t see anything offensive about the term “autistic.” I use it quite frequently to describe others and myself on the spectrum. First, let me ask a rhetorical question. Would it be offensive if someone said, “the man is tall” or “the girl is blond”? Does that sound offensive? Would it be better to say, “he’s a man who’s tall” or “she’s a girl who has blond hair”? The answer of course is no. Nobody would find it offensive to say somebody is blond because there’s nothing wrong with being blond, and saying “she has blond hair” really means the same thing as “she’s blond.” The same applies to whether you say “he’s tall” or “he’s a man who’s tall.”

Would it be offensive to call a fireman a “fireman”? Would it be better to say, “he’s a man who fights fire”? Would it be offensive to say, “Jack is a cool guy”? Would it be better to say, “Jack is a guy who’s cool”? They both mean the same thing, don’t they? So why is it considered offensive to say someone is autistic? And why is it better to say that they “have” autism? To me, that kind of implies that autism is an illness that needs to be cured — which it isn’t. It’s not simply something someone has that needs to be fixed. Autism is a part of what makes a person who they are. I’m not saying autism defines a person entirely, but it is part of who a person is. It’s not like a common cold that someone simply “has.” It’s a rather big part of a person’s life. It affects the whole way someone thinks and processes the world. I know this is the case for me personally. I undoubtedly am autistic. I believe “autistic” isn’t an offensive term unless it’s used in an offensive context.

I’ve heard certain terms that do offend autistic people, but “autistic” hardly ever seems to be one of them, and if it is, it seems to be because someone has a problem with the term “autism” in general and don’t like to consider themselves “autistic” or as “having autism.”

I’ve also heard of a few people with autism who find the term “having autism” offensive because they feel that autism is a part of them and they want to be referred to as “autistic.” Even parents feel this way because they feel like autism is what makes their child who he or she is.

The Autistic Gardener,” a television show in the U.K., uses the term “Autists.” I don’t mind this term, but I don’t want to alienate myself as a totally different type of human being. I’m different, and I do process things in my own way, but I also belong to the human race. I thought it was a fantastic program though.

The NAS research on how to describe autism concluded that adults with autism prefer “autistic” and “Aspie” (usually referring to someone with Asperger’s syndrome). However, family members didn’t like the term “Aspie.” Professionals preferred “autism spectrum disorder,” but I think “condition” is better than “disorder.” All groups preferred “on the autism spectrum” and “Asperger’s syndrome.” I think what people with autism want to be called should be listened to more than parents’ and professionals’ preferences.

Personally though, I couldn’t care less if someone says I’m autistic or that I have autism. They both mean the same thing in my eyes, and I use both terms. So honestly, you could say I have autism because it is a condition that I was born with and is something I have. I’m also autistic because autism is a part of me. Which term I’d use would really depend on which term sounds better in a particular context. In fact, I’d never even thought about which term was better until I saw all the controversy about it.

I’d say no matter which term you use, you’re going to offend some people, so I don’t think it’s anything to worry about. However, you should respect the wishes of a person with autism. If you meet people with autism and they want you to say they “have autism,” then say they have autism. If they prefer you to say they’re autistic, then say they’re autistic. It’s important to respect the individual’s wishes. In my experience, the majority of people with autism don’t seem to care which term you use, just like I don’t, but please get to know the individual.

This post originally appeared on Alex Lowery Speaks About Autism.

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Awesome Photos Show How Little Disability Holds These Skateboarders Back

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On July 26 and 27, athletes from all over the world headed to Huntington Beach, California, to compete in the 2015 Vans U.S. Open of Surfing, the largest surfing competition in the world. The annual two-weekend-long event, which also includes skateboarding and BMX biking competitions, regularly draws more than half a million spectators who come to see memorable performances.

But those who attended the first weekend of the event this year may have found the competition memorable for a different reason.

Take a look at the extraordinary adaptive skateboarding athletes in the photos below. Andrew Hale is a below-the-knee amputee as the result of a MRSA infection. Justin Beauchesne lost both arms and a foot to meningococcemia, a potentially life-threatening blood infection, and Oscar Loreto was born without his left foot due to a congenital birth defect.

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Andrew Hale. Photo credit Chris Sanchez, Adaptive Action Sports
Justin Beauchesne
Justin Beauchesne. Photo credit Chris Sanchez, Adaptive Action Sports
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Justin Beauchesne. Photo credit Chris Sanchez, Adaptive Action Sports
Oscar Loreto
Oscar Loreto. Photo credit Chris Sanchez, Adaptive Action Sports
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Oscar Loreto. Photo credit Chris Sanchez, Adaptive Action Sports

Each of these athletes proves disability doesn’t have to stand in the way of some serious shredding. Hale, 29, says he hopes younger athletes with disabilities internalize that perspective rather than viewing their conditions as hinderances.

“My advice to younger athletes is to not let anything hold you back; you should always set goals for yourself,” Hale told The Mighty in an email. “Small goals are always good. Believe in yourself!”

The Vans U.S. Open of Surfing final competition rounds will be held in Huntington Beach the weekend of  August 1 and 2. For more information, head here. For more information about Adaptive Action Sports, head here.

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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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