Why I Don’t Wish My Brother’s Autism Would Disappear

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Dear Autism,

Screen Shot 2015-03-12 at 9.49.39 AM First of all, I’d like to say that you light up my world. You’ve made my brother, Harry, the way he is, and I’d like to thank you for that. Because of you, I’ve gotten to know Harry better as a person, and I’ve learned to accept him for who he is.

In addition to teaching me acceptance, you’ve also taught me what being unique is all about. Even though Harry has a harder time learning than I do, doesn’t understand a lot of things and acts differently than I do, he’s just like any other person. He wants others to love him, he wants to make new friends, and most all, he wants to have fun. Harry is lucky because he’s surrounded by people who love him unconditionally. He deserves to live a long and happy life.

Despite your many pros, you also have some cons. Sometimes, Harry uses anger to solve his problems because he doesn’t quite understand how to solve his problems in a proper manner. But most of the time, Harry views the world as a burst of light. I wish I could view the world the way he does. I remember when we were in high school together, Harry would greet everyone he knew, no matter what clique he or she was in. A moment from his high school days that brought me tears of joy was when he received his Senior Superlative: “Most Likely to Brighten Your Day.” That showed me the students at our high school not only accept him — they also treat him just like everybody else.

Finally, I’d like to thank you for showing me to never judge a book by its cover. My brother is different, but that doesn’t mean he can’t have the same opportunities as everyone else. He’s capable of having a career doing what he loves (a librarian) and of learning to do things on his own.

Autism, you have some flaws, but in the end, my life would not be the same without you. So, can you please do me one big favor? Don’t disappear. Harry, my love for you will always be unconditional. I couldn’t ask for a better brother.

Love,

Caroline

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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This Resourceful Grandfather Found a Beautiful Way to Handle His Grief

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Roger Leggett felt immense heartache four years ago.

In a span of just a few weeks, Leggett, from Atlanta, lost his 24-year-old son to heat stroke, and his then 4-year-old granddaughter was diagnosed with brain cancer, according to USA Today.

After witnessing a woman in the Children’s Healthcare of Atlanta hospital struggle to manage her sick child’s IV pole, Leggett had an idea. He decided to handle his grief by putting his hands to work.

He altered red wagons so they included IV poles, and now parents can wheel around their children while they undergo chemotherapy or recover from a procedure. Roger has converted almost 100 wagons for the hospital, according to the YouTube video below

This month Leggett and his family finally got some good news —  his granddaughter, Felicity, is in remission.

Get the full story in the moving video below:

h/t GodVine

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Autism, I’m Going To Be Honest With You

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To Autism,

I’m not going to begin my letter with “dear” Autism — you don’t deserve that greeting. You don’t really deserve anything. You’re nothing to me because my son is not defined by you. My son is defined by his beautiful nature and the unconditional love of his family. His foundation is built on these things. You’re not what he is, you’re what he has, and we will never be overcome by it.

When he first received the diagnosis of you, I will admit that initially I was in a tailspin about what it all meant. You overwhelmed me with the amount of professionals required to enter into his life — speech therapist, occupational therapist, pediatrician, child psychologist, etc. For a time, you made me feel like I wasn’t adequate to deal with these things. I showed you.

Sure, you’ve presented him with struggles in his young life. My son is 8, he cannot speak, he cannot toilet himself and has difficulty with some day-to-day tasks. He didn’t succumb to those struggles. He worked out a way around you, a way to side-step you. He knows his routines, and they make him happy. He learns new things every day. He eats well, he’s learning how to dress and undress himself, he takes other kids around him in his stride. There are times when you upset him, particularly when he cannot communicate a want or need. However, in spite of you, he still manages to get his point across.

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Autism, you can be scary, particularly in the way you seem to whip people up into a frenzy of controversy on social media. You can make well-meaning parents turn on each other. You’re an expert in undermining, in insurgency and in generating fear. You do all these things because in the end, despite the journey different families are on, we learn to deal with you and in a way, embrace you. We’re all better people because of you and in the face of you.

So, Autism, you’re a part of our lives; don’t think for a second I’m in denial about that. I see you every day. I’ve seen the lows, and I’ve seen the highs. We walk on a rocky, winding path, and sometimes we trip over. The thing with people who live with you is that we always pick ourselves up and grow that little bit fiercer and stronger. Thank you, Autism. My boy is beautiful, my family is strong and through the lessons you’ve presented to us, you’re no longer an overpowering invader.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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.

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How One Song Unlocked the Secret to Treating This Man’s Untreatable Disorder

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In 2007, Frederico Bitti, an Italian journalist, was conducting an interview when he was suddenly unable to look at his colleague. Each time he tried to look to his left, an unknown force pushed his head in the opposite direction.

At first, doctors couldn’t diagnose his condition, so his symptoms worsened, according to The Globe and Mail. Bitti began experiencing painful muscle contractions and involuntary tremors in his neck muscles that made everyday actions, such as shaving and drinking from a glass, incredibly difficult.

Bitti was eventually diagnosed with focal dystonia, a disorder characterized by involuntary muscle movement and stiffness. Its causes are mostly unknown, so doctors weren’t sure how to treat him. He tried Botox injections and a variety of medication, which did little to relieve the symptoms. Doctors even recommended brain surgery. Nothing seemed to work.

Desperate, Bitti flew to Toronto to meet with Dr. Joaquin Farias, a dystonia therapist known for treating patients by reteaching them to use affected muscles rather than by prescribing medication. Bitti had been working with Dr. Farias for a few weeks when he reached a turning point in his recovery. One day while he was walking back to his hotel room, “Vogue” by Madonna came on his iPod.

“As I followed the music, I noticed my walking was better,” Bitti says in the video below. “I got home, I filmed myself dancing, and I showed it to him [Farias]. He was like, ‘Oh my god. This is your treatment!'”

Hear Bitti’s story in the video below — and check out his awesome dance moves at 2:50.

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The ‘R’ Word I Call My Brother

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He hit me. Our petty argument had turned into a fistfight. My 20-year-old brother, little only in age, had delivered a blow to my left arm and a swift kick to my right thigh. I thought the only rules in fighting were “never hit a girl” and “no kicking,” but I seemed to have been wrong on both accounts.

As the oldest of three and the solo girl in the trio, I’d been jumping in on my brothers’ fights for as long as I can remember. They would usually end with me giving one of them a boxer-ripping wedgie (mom was never fond of that) and tickling the other until they said “uncle.” I prided myself on being tougher than the two of them, even though they did always call me “Sissy” — mostly for sister, partly for my demeanor. My wit carried me in the ring we more affectionately called a living room. I would assert my dominance as the oldest, not-to-be-taken-lightly sibling by being patient and tactical. This is how I approach most things in my life. But in the Winter Break Brawl of 2012, I had not been patient nor tactical. I’d let my impulsivity and my anger get the best of me, and I punched my brother back. My leg felt like it was starting to bruise, and my brother was holding his arm, but otherwise we were both injury free. Physically anyway. Later that night, I went to my room and cried.

I should probably mention that I’m not a crier. The waterworks are a more common trait of my happiness than of my sadness. I usually joke that the reason I cry so much when I laugh is because my tear ducts appreciate the break. I should probably also mention that my brother Ryan is autistic. He has a form of autism called PDD-NOS, which stands for Pervasive Developmental Disorder – Not Otherwise Specified. The DMV-IV describes PDD-NOS as “severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills, or when stereotyped behavior, interests, and activities are present, but the criteria are not met for a specific PDD.” This is pretty much just a fancy way of saying he has a learning disability, he gets uncomfortable around strangers, and he does some other stuff that might seem off. I bet you have friends who get extra time on tests. I bet you’ve also been uncomfortable around a stranger in your lifetime, and you probably do some other stuff that might seem off too. But I bet you’ve never been called a retard.

My youngest brother, Tyler, and I had decided we wanted to watch a movie. We asked Ryan to join so he would spend some time with us downstairs. One of the many “Ryanisms” that define my brother best is his love for scribbling the results of the weekend’s sporting events in his binders. Ryan is carefree about everything except his binders. He’s meticulous and thorough, listing everything from our town’s high school baseball stats to my younger cousin’s soccer team roster. He has professional teams’ binders that Google helps him with, but for the other stuff he sends text messages to our family and Facebook messages to the high school kids. It’s quite the system.

Temple Grandin, a doctor with autism in the field of animal science, gave a TED Talk making a case for how the world needs all kinds of minds. My brother’s mind works in such a way that a task that may become tiresome and tedious to others is exciting and worthwhile to him. Ryan genuinely enjoys the endless task of updating and editing his binders. This is the same for many autism spectrum disorders. There are autistic children and adults whose minds have the unique ability to recall calendar dates from any decade, telling you the day of the week your birthday fell hundreds of years ago. There is a man with autism who can fly in a helicopter once over a city and perfectly replicate the entire scene in a drawing — even the window counts on the buildings will be correct. There are even people who do not communicate but can play the piano and write beautiful compositions without having ever been taught a note. My brother’s mind likes sports statistics.

Anyway, Ryan had spent all day scribbling and note-taking and sports-watching, and Tyler and I thought family movie time would be nice. Ryan was all for it, especially when we told him we hadn’t seen “Ted,” and that was the movie of choice. “Oh, guys, I have that on my X-Box. I’ll set it up and stuff.” As it turns out, his rental had expired, but he insisted on setting up the movie anyway. He wanted to use his Christmas gift card to buy the movie again. As Tyler and I were brainstorming other options, Ryan grew frustrated. “No I can do it. I can get the movie. Guys let me do it.” We figured if we could just get the movie playing before Ryan, he would let it go. Ryan continued to yell, and in trying to calm him down, our voices raised too. “Ryan, relax, we can set it up, and you won’t have to use your gift on a movie you’ve already seen.” The situation escalated, prompting Ryan to take matters into his own hands… that he turned into fists.

I’ve always viewed Ryan as a gentle giant. He’s a big kid, and he hasn’t figured out the damage he can unknowingly do with his stature. Sometimes my back cracks when he gives me one of his big bear hugs. My grandmother has taken to scuffling away from him just to slow him down a step because he needs to be reminded that some things are fragile. (That, and he tends to break everything he touches.) With many autism spectrum disorders, sensory information is processed differently. Touch is something that often needs to be a conscious thought process for Ryan. The perception of touch, taste, sight and sound are heightened in many autistic children. It took him years before he could watch fireworks. He loved the lights, and he loves loud sounds (we know this because he sits on his drum set for hours with rock music blaring in his headphones), but the combination of the two would put him on edge. In our argument, his emotions combined with the background noises and the task at hand led to a sensory overload.

It wasn’t so much the fists or the yelling that upset me about this instance. It was partly the reaction, or lack thereof, from my family members, and it had also been that I was unable to calm Ryan down. I hadn’t recognized the cloud of sensory triggers we’d been creating until my own senses shot a few signals from my arm up to my head telling me I’d been hit. My father’s only comment was that he had to write about the “incident” in Ryan’s notebook and that he was sorry it had happened. I later learned that my parents have to keep track of things Ryan does for his social security benefits. To me, my dad’s lack of a reaction was a way to avoid changing Ryan’s behavior. If Ryan acted out, it meant checks would keep coming in. I resented this. I thought my parents were being consciously passive at Ryan’s expense. I realized after there was a lot more to it than that, but I couldn’t help but wonder if the passivity was a result of circumstance. My mother came to my room and apologized too, telling me, “Ryan probably won’t apologize so don’t take it to heart. That’s just how he is. He doesn’t know better.” But I knew he’d known better, and I also knew this was not indicative of who Ryan is. To my mother’s surprise he texted me saying, “I’m sorry I fought you.” It meant more to me because he hadn’t been prompted to apologize. I’d felt right in knowing Ryan would know better, and I took solace in that.

A defining quality in my relationship with Ryan is my insurmountable faith in his abilities. I choose to believe he’s not disabled but that he’s abled by his own unique and inspiring actions. I’ve always been amazed by his tolerance for pain, his quiet wisdom and his ability to make people laugh. I realize my brother does need help in certain things, such as academics and the occasional social interactions, but I’ve never viewed him as inferior. I’ve gotten in arguments with my mother over my brother’s capabilities because I believe he needs someone to advocate for him. If my mother read that sentence she would probably yell at me. “What do you mean he needs someone to advocate for him? I’ve been advocating for Ryan his entire life. Who are you to say I haven’t done that?” And she would be completely right. My mother has been advocating for my brother his entire life. But I think she and I have been advocating for him in different ways. She’s always had to advocate for his disability. I’ve always had to advocate for his ability. The Winter Break Brawl of 2012 showed me that at times I’ve been blinded by my optimism. But when Ryan texted me and apologized, I thought maybe all Ryan really needs is more people who believe in his ability, his emotions and his mind. He used to tell me how jealous he was that I had textbooks, which later turned into him wondering why he wasn’t going off to college a year after me. I thought about Temple Grandin. She believed in her own ability, and she went on to be extremely successful. She commented on the people who believe the characteristics of autism can’t be modified or controlled by saying, “I am living proof that they can.” She’s become a spokesperson for autistic ability rather than disability. My mother introduced me to her story, and yet I still sometimes wonder if my mother truly believes in the lessons Temple Grandin was trying to teach her. 

If a friend calls someone a retard, and you’re not around to hear it, does it still make a sound? “Oh I’m sorry, I… I didn’t mean like your brother. You can’t even tell with him anyway.” The idea that apologizing negates the harshness of the word — the idea that apologizing to me makes up for the fact that my brother was just offended. What bothers me the most is that I used to sit back and try to make them feel better about their insults. I would justify their comments for them by saying, “It’s OK, you can barely tell with my brother anyway.” I realized I’d created my own spectrum of mental disability. I’d placed my brother at the “more able” end, unknowingly telling my friends it was OK to use the word “retard.” I did this as a means to protect him from the harshness of the stigma, but my instinct to protect my brother only reinforced the negative ideologies surrounding autism. I didn’t want to be the person who brought the issue to light. It follows a similar token with racial slurs – the idea that calling someone out for making a racially insensitive remark makes a situation about race “when it hadn’t been before.” What people fail to realize is that the problems are always there, but the solutions are hidden in the cowardice that is silence.

Ann Coulter tweeted, “I highly approve of Romney’s decision to be kind and gentle to the retard.” I’ll just let that one sit for a minute, or maybe I’ll let it sit for a few more than that because if you had a learning disability it would take you the extra few minutes to process. It wouldn’t take you long to process that this remark was insulting. No, my brother understands that pretty quickly. The thing that takes him longer to understand is why someone would say such a thing. A 30-year-old man named John took a day to think about it, and responded to Ms. Coulter in a thoughtful and well-written letter. He told her, “You assumed that people would understand and accept that being linked to someone like me is an insult…” He then went on to say that comparing someone to people like him should be considered a badge of honor, because “no one overcomes more than we do and still loves life so much.” This statement resonated with me. My brother reminds me of this every day. Ann Coulter’s comment had the Twitter world tweeting and trending. Millions of people from around the world could react on the insensitivity of the comment in seconds. The responses, however, focused on her disregard for those with disabilities. Doctor Grandin is a professor at Colorado State University and is known for her work in animal science. Alexis Wineman became the first autistic woman in the Miss America pageant. Adam Young, founder of Owl City, has found great success in the music industry, and also has Asperger syndrome. These people don’t let autism define them but rather let their abilities create a new definition for autism. That should be something worth trending.

My brother is an Olympian, rivaled only by Michael Phelps in his Olympic medal count. In fact, Ryan put all his medals around his neck and walked into the living room telling us, “I’m ready for the closing ceremonies!” He’s a comedian with stand up routines explaining that the seven continents included “thou shall not cover your neighbor’s wife… like with a blanket or something” and that the ten commandments included “Africa and Asia and those other places.” He had a doctor’s office in stitches the time he asked why no one had shown him how to make the cup float when they needed a urine sample, and he always made us laugh when he would affectionately sing Bob Marley ‘s lyrics as “I Shot the Sharon” to our neighbor… Sharon.

Ryan’s a sports expert, reminding us when we accidentally consult dad first: “Dude, I know everything about sports, not Dad. Ask me something.” My brother is a dangerous chef, and by dangerous I mean he has on multiple occasions placed his hand on the hot stove just to see if it was ready. He does a phenomenal replication of a child’s drawing – even the most highly trained artist would have trouble deciding if it was Ryan’s art or the artwork of a 3-year-old. He will tell you, “Yeah, I’m special. In a good way.” If there existed an award for best hugger in the world, my brother would win. He’s compassionate, caring and thoughtful. He’s wise beyond his years. My brother is incredible, and yeah, you’re damn right he’s special. But more than that, he’s abled.

Their R-word is Retard. My R-word is Ryan.

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This Is My Definition of ‘Hyperlexia’

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My son has hyperlexia and hypernumeracy.

You’ve likely never heard of these.

Neither had I until November 6, 2014. But, like me, you’ve probably broken down those words into pieces and figured out their meanings accordingly. When given an unfamiliar diagnosis, I took the first logical step: I Googled it. There I was, after months of wait lists, with some unfamiliar diagnoses, typing those two words into Google only to hit another roadblock. There was practically nothing — yes, nothing — for me to read on the topic beyond the basic definition. Especially on the topic of hypernumeracy (there are currently 63 search results in Google on this particular topic). How disappointing is that?

I’ve quietly struggled for years trying to understand my child’s extreme fascination with letters and numbers, his irrational outbursts and lack of conversation. And then I was finally given a diagnosis (OK, more like multiple) but ended up feeling just as lost as always. The psychologist basically handed me a piece of paper and said, “See you in three years. A full report will be mailed to you shortly.” So between that and the lack of results via Google, I am disappointed in the information on hyperlexia and hypernumeracy available to parents like me.

Less than two weeks after, I found myself at a meeting for parents at Autism Services. At this meeting, each parent shared their name and a little bit about their child who is either on the spectrum or is waiting to be assessed for autism. I mentioned hyperlexia and hypernumeracy, as I feel it’s important to share these details. I’m glad I did because after the meeting, a gentleman who was sitting behind me approached me to discuss hyperlexia. Like me, he’d never heard the term before. He was interested in reading more about it because his son had been intensely obsessed with numbers. This chance meeting was a lightbulb moment for me.

I knew I had to write about hyperlexia. I had to write about it not only as a way to help me understand it myself but to also hopefully connect with other parents dealing with it. My hope is that I can create a great resource for parents just like me, trying to navigate the crazy, wonderful world of hyperlexia and/or hypernumeracy.

What is hyperlexia?

Hyperlexia can be defined as:

“A precocious, self-taught ability to read words which appears before age 5, and/or an intense fascination with letters, numbers, logos…[accompanied with] significant difficulty in understanding and developing oral language.” 

Basically, my son started reading and spelling words before he turned 2. It was all self-taught. Yet, he cannot carry a conversation, responds to questions with inappropriate answers and sometimes appears as if he didn’t hear me ask a question at all.

I realize (and willingly admit) that I don’t know enough about what hyperlexia is. And honestly, I don’t think a definition does it justice. Yet, I realize many of you won’t know what it is, so I highly suggest reading this hyperlexia pamphlet for more information. Although I cannot define hyperlexia confidently and still don’t really know what it’s about (but I’m learning!), I’ve been living, breathing, and experiencing hyperlexia for five years. That is what I’m going to share with you. I’m going to show you what hyperlexia and hypernumeracy look like.

This is hyperlexia…

Watching movies in their entirety, including the credits, because the credits are filled with letters.

Naming the movie you want to watch by the length of the video playback instead of its title. Yes, calling a movie 1:26:32 instead of its proper title. And yes, he was always that precise.

Walking around the block when you’re just 1 and a half years old and looking at license plates — not just looking but tracing your fingers along every single letter and number on the license plate. Not just one car either. Every single car you walk past.

Turning any kind of loose part into letters and numbers. See hereherehereherehereherehere and especially here.

Reading and spelling difficult words at an early age. And doing it correctly.

Never having a letter reversal stage when learning to write.

Learning to spell in another language when you don’t speak another language and haven’t been taught it.

Never having cute kid-invented spelling when learning to spell and write.

Flipping through every single page in a book before being able to move on to a new task.

Flipping through a new book to find out how many pages there are, browsing the table of contents and perusing the index. Then referring to those books by the number of pages instead of their title.

When asked to draw a picture of a big cat, writing the words “Big Cat” instead.

Going for a walk, passing under street lights, only to have your child say that’s #10 or that’s #12 because, believe it or not, if you look up at that street light, you will find a number. It’s not a particularly large number, but he spotted it.

Writing numbers and letters in chalk all over the deck, the railings, the play structure and even your brother’s hat…

Having meltdowns because the clock in the kitchen says 11:20 and the clock on the thermostat says 11:22 and the clock on the microwave says 11:23.

Covering all the digital clocks in the house for months because, no matter how hard you try, you can never get the darn clocks to stay in sync.

Writing the words “My Duck” with magnets after fighting over a toy duck with your younger sibling. Your age at the time: 3. Your brother’s age: 14 months. Too bad your brother’s not old enough to read!

Taking a blank notebook, writing the page numbers for each page in the book, and then writing “The End” on the last page.

Doing math well beyond your age.

Asking the psychologist if she loves fractions (you just turned 5).

Making an entire clock using plain wooden blocks.

Skip-counting by obscure numbers, like the number 12, at age 4.

Asking, “How many times do I have to tell you that?” and getting this answer: “291 times.” Well played, my son. Well played.

And to give you the full effect, I made a video!

Hyperlexia and hypernumeracy are both extremely fascinating. Some of the things that my son does absolutely blows me away and, oftentimes, I don’t take a photo or write it down. I want to consciously take more photos of what he does and keep a better written record of things he says. To do so, I will be sharing photos of his hyperlexia and hypernumeracy on social media using the hashtag #thisishyperlexia.

Come embrace the world of letters and numbers with us!

If your child has hyperlexia, then please join the fun. Tag your photos on Instagram with #thisishyperlexia. I would love to see them! Or if you’re simply fascinated in learning and seeing more, then be sure to follow #thisishyperlexia for photos, as well as useful hyperlexia resources and articles (see #thisishyperlexia on Twitter).

Want more information on hyperlexia?

Browse through the hyperlexia resource guide for additional information, news articles, recommended books, and more.

This post originally appeared on And Next Comes L.

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