The Birmingham Children’s Hospital in Birmingham, England, recently teamed up with Google and Autism West Midlands to create an extensive virtual tour for patients with autism and their families. It’s just like Google street view — but with a glimpse inside every door and room of the hospital.
“We know that children with autism really struggle when they come to visit us,” the hospital wrote on its Facebook page. “They get anxious and upset about unfamiliar places and this can often be very hard for the parents too.”
You can drag your mouse across the screen to explore spaces, or you can use the arrow keys to digitally navigate the hospital. The hospital also provides links to 19 of its common areas if users want to search that way as well.
In addition to providing families with a tool to “familiarize themselves” with the “hospital before their visit,” the facility also has a “Sensory Garden” where patients of all abilities and needs can play and relax.
To check out the virtual tour, visit the The Birmingham Children’s Hospital’s website here.
I first heard about the movement to call April “Autism Acceptance Month” instead of “Autism Awareness Month” this year, in the last few days of March. Coincidentally, it was also the time that I truly began to accept my early struggles with peer acceptance as a child with undiagnosedautism. For many years, I held onto the upset I felt around the bullying I endured beginning in second grade. We didn’t know I had autism at the time, because back then there was little awareness.
It all began when the best friend I met at age 2 moved to another state over summer vacation. I was so traumatized by the change that I refused to play with any of the other kids in the neighborhood. This upset another girl down the street, so on the first day of third grade, she managed to talk all the other kids into snubbing me. No one would talk to me the entire day. I believe it was because of my autism that I didn’t understand why, and I didn’t react the way they expected. That was the day it seemed the bullies learned I was the most fun target of them all.
I held onto that anger for years, but I let it go last week when someone posted a picture of our sixth grade class on Facebook. One of the people who commented on it was that girl from down the street. And she sent me a friend request.
In that moment, I realized that her 7-year-old self probably felt snubbed. She was probably hurting that summer because her friend was ignoring her. She had no idea how the other kids would run with it. She moved on and made new friends just like any other kid would. I was the one who was stuck in a world without awareness, without the support that, as an autism advocate, I now fight for to help the kids who have come after me.
I accepted that friend request, and in less than one week, we’ve had some amazing conversations that make me realize what life could have been like if my parents had known why I was acting that way back in the summer of ’82, and had been able to get me the proper support. I now accept that it wasn’t that little girl’s fault any more than it was my fault. It was the lack of awareness. But we have awareness now. And I agree with my peers. It’s time to ask for more than awareness. It’s time to fight for acceptance so that every child can be accepted for who they are.
Every child and adult on the autism spectrum deserves to get the support they need from family and schools. Every child deserves to be happy to go to school to learn and not be bullied. Every adult deserves to have a family and a job without having to be “in the closet” about their diagnosis. We are wired this way. Accept it.
The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about?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.
Emily Gibby, an employee at Disneyland in Anaheim, California, is trying to find an autistic patron who lost a lanyard near the park last week.
One of Gibby’s colleagues found the lanyard at the Disneyland Hotel on March 24 and passed it on to Gibby, a Disney spokesperson told KTLA. The badge attached to the lanyard has a note which reads, “Hello! I am autistic, and I don’t talk much, but I would like to trade for Mickey pins!”
Gibby posted a photo of the lanyard on her Facebook page, adding that she and her co-workers decorated it with even more pins and a medallion.
Alright Cast Members I need your help! This morning during the pin release I was working, we found this red lanyard with…
Alright Cast Members I need your help! This morning during the pin release I was working, we found this red lanyard with four pins on it. It had a white note attached that said “hello I am autistic and I don’t talk much but I would like to trade for Mickey pins.” So we did what any Cast Member would naturally do.. We filled up his lanyard with Mickey pins and got him a Mickey medallion as well! But now we need everyone’s help in finding him/her!! Share this post and help us find our friend! Be on the look out! Multiple lines of business have already been contacted and informed that we have this lanyard at Pin Traders for him/her! Let’s work some magic and try to find our friend!!
Many individuals with autism have sensory issues and may grow very attached to certain objects, or parts of objects, according to The National Autistic Society.
“I have always known that people with autism have daily struggles that some of us will never realize, but recently I have learned that something as small as losing a possession could drastically change their day, week, or even their month,” Gibby wrote in a post on April 2. “Losing a small item could lead to large behavioral changes and meltdowns that can not be solved by just ‘buying a new one.’”
“With so many big things happening all around the world, it’s important to remember the little things that might be really big things to a certain person,” Gibby posted April 1.
If you have any information that might help, contact Disneyland’s lost and found department at (714) 817-2166.
My name is Tom. I am 16 years old and I have autism. I went to the United Nations’ World Autism Awareness Day 2016 because I wanted to learn more about global issues affecting autism. Being a part of World Autism Day at the United Nations was an excellent experience that changed my perspective about what needs to change in global attitudes toward autism.
The World Autism Day conference of 2016 focused on inclusion and neurodiversity and included speakers from all over the world. The keynote presentation was given by Steve Silberman, the author of “Neuro Tribes.” One of the things that Mr. Silberman said in his keynote was that inclusion “does not mean just inviting people with autism to visit.” Mr. Silberman stated that inclusion is about ensuring we have an equal chance. I felt that this was one of the most important statements made at the conference, because it brought up the point that people with autism need to be included in a meaningful way.
I was sad to hear that many people living with autism outside of the United States are subjected to mistreatment because of negative stereotypes. More than one speaker at the conference spoke about how people with autism are treated inhumanely. It hurt my heart to hear their stories. I wondered how we can change negative attitudes toward autism.
When Thomas Gass, the U.N.’s Assistant Secretary-General for Policy Coordination and Inter-Agency Affairs, said during his presentation that “this is a shared vision of humanity,” it came to me. I came to believe that people with autism and their families need to be out in the open about autism. I feel living in the shadows with autism does not help us, because people cannot learn from us. I believe people are afraid of what they don’t understand. If we live in the open with our autism, we might be better understood. That has the power to change negative stereotypes.
My experience as a person with autism at World Autism Awareness Day was a positive one. I believe more people with autism should have an opportunity to be a part of this event.
The Mighty is asking the following: Share a powerful moment you or a loved one has had with a public figure. Or, write a letter to a public figure who you feel has helped you or a loved one through his or her work.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.
Considering how mundane it was, the photo I posted on Facebook received a gratifying number of “likes.” Just the two of us at a picnic table on a summer day.
By social media standards, life with my son may not win any awards for excitement or variety. We have few adventures to chronicle, no photos of thrill-packed vacations. Our interactions are more modest affairs, and ever more predictable.
My friends are sensitive to Daniel’s challenges, though, and supportive of my longing to connect with him after the nearly eight years he’s lived away from home. Their likes and kind comments mean a lot to me, and I recognize that their acknowledgment is one of the reasons I post photos of us.
I wonder sometimes if I’m actually seeking encouragement, a kind of validation the value of these visits exceeds my own longing for something more. Because I feel more like a spectator than the woman once at the center of his world.
In my lowest moments, I question my relevance to Daniel’s life now that he’s a young man, cared for so efficiently by a team specifically trained to address his needs, the behaviors that rendered my care for him obsolete.
I was told to expect a change in our relationship when Daniel moved to this group home eight months ago, a shift in our interactions now that I’m no longer steward of his care. I’d be free from those demands, free to explore a more satisfying connection with him as he enters adulthood.
As he’s been out of my care for years, however, this prediction never quite rang true, and I’m beginning to doubt it will ever apply to the two of us. More than ever before I feel I’ve lost my footing as his mother, this part-time role I’ve been playing since Daniel was just 15.
Or maybe I can’t accept that the path beneath my feet may be the one we’ll be traveling from now on.
The scripts for our visits seem to be written before I arrive, and I brace in advance for the ache of resignation which follows me home. I know how these visits will unfold, week after week, the joy of seeing my son tempered by longing for the deeper involvement that’s been missing for months. Crossing into Wisconsin on that dazzling summer morning, the caption for the photo I’d later post to Facebook had already formed in my mind, clear as storm cloud: Picnic with Daniel on a beautiful day. It’s not enough. But it’s what I have.
We met at a local park and sat together while Daniel tore through the sticker book I’d brought him, affixing the familiar images in their slots as he’s done hundreds of times before. I stroked his arm and caressed his summer-short hair, deflecting as best I could his repeated requests for the soda stashed in my car, his treat for after lunch. His “obsessions” have intensified over the last few years, and his associations of me, what he counts on when I come, are rigidly defined. There is so little I can give him now. I don’t know how to break the cycle we are enmeshed in, how to change the tenor of our engagement without breaking his heart.
Perhaps I should have tried taking a walk, just the two of us, free of the eyes and ears of the aide who accompanies him wherever he goes, even on my visits. It’s been months since I’ve been alone with my son. The compulsive behaviors we are working to modify are too unpredictable to trust managing on my own; they seem to be triggered, in fact, by my presence. Old patterns are difficult to break. Memories of losing control of my son remain, vivid, haunting and formidable.
Yet time with him has come to feel like supervised visitation, the structure in place to help him dictating the terms of our relationship. I miss time alone with him, privacy as I mother him the only way I can: tender, murmured endearments meant only for him, cuddles and hugs that leave me self-conscious when witnessed by caregivers who never knew my son as a boy, when he was, first and foremost, my child.
I’m ashamed to admit I crave freedom from the support he so desperately needs, the scrutiny of onlookers I sense weighing my effectiveness with this special young man who used to be only mine. The very competency of the staff rakes the embers of my doubt, which has smoldered for years, the guilt that my own care for him was ultimately not enough. I am an interloper, an addendum to the life he is leading now, a life fuller and richer than he’s experienced in years.
I don’t know how to reconcile this sense of loss derived from what should be celebrated, the development of my child as he learns a new life apart from me. The bond I’ve been longing to recapture since the day he left home is swaying now under the weight of distance, of time lost long ago.
There is a history I’m still reaching for, written through physical proximity, through countless days of bathing and dressing and snuggling and tickling, of high fives and blown bubbles and brushed hair, of tied shoes and trimmed fingernails, of tedious car rides and leisurely walks on autumn afternoons. A history composed as I fixed meals under his curious eye, enjoyed in companionable silence or giggling banter, unfolding from our seats in the bleachers while we clapped in delight as the dolphins he once loved leapt and splashed at the Shedd Aquarium.
It’s a rhythm scored over years speaking a language without words, weathering together the meltdowns and setbacks, savoring the small triumphs of our uncommon life together. While resting side by side against his headboard, books or flashcards across our knees, as night after night I tossed his stuffed animals onto the bed as he called for them, laughing, by name: “Zebra!” “Cow!” “Wolf!” It was written by the warmth of my hand across his forehead as I kissed him once more, and once more again, before turning off the light. “Good night, sweet Daniel. I love you, Daniel, my sweet, beautiful boy.”
It would be simpler, wouldn’t it, to accept that he’s moved naturally into a new phase of life, and embrace with gratitude all the good that life offers now, the opportunities the framework of this life provides? Perhaps he is more content than I can possibly understand, taking all he needs from me and our visits, the routine we’ve established, the mild experiences of my Facebook posts.
The procedural support is in place to help him towards a positive, independent direction. But he needs the emotional nourishment of his mother, too, of all of us who have loved him without question for a lifetime, whose love transcends all circumstance. I can’t rest until I find that place again.
I’m not ready to concede that this is enough, that superficial visits are as good as it gets with my son or our relationship to one another. No line will be drawn beneath Daniel’s life or my experience with him. I have a role that only I can play, even as I stumble and gasp and bungle my lines. Letting go of my dreams for him has never been an option. Acquiescence to a lesser experience would weaken my fight for him, my advocacy, my hope.
That hope is painful sometimes. But it’s what I have.
The Mighty is asking its readers the following: What’s one part of your or your loved one’s disability and/or disease that no one talks about? 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.
Several years ago, I received an e-mail from a woman who was a reader of my blog and wanted to know what sort of advice I could give to her 9-year-old daughter who had just been diagnosed with autism. She suggested that I write a blog post in the form of a letter to my younger self, which could also help other young teens and adolescents on the spectrum, as well as their parents. This letter, which was originally published on my blog, has since been featured at numerous autism events and published in several outlets, including the blog of Autism Speaks.
I know you’re feeling pretty bad right now. The other kids make fun of you a lot, and you don’t know why. You’re trying really hard to be friends with them — doing all of the things you think they want you to do — and it’s just not working. But there is one thing you should know: It’s not your fault. Other people might say that, and you won’t be able to listen to them; but I am hoping that you will if it’s coming from me. It’s not your fault. Say it over and over in your head when you feel the worst, because that’s when you’ll need it most.
It’s not your fault. “How can it not be your fault?” you’ll say to yourself as the next few years go by. Everyone else can do this, can make friends, and be “normal.” Why can’t you? That’s just one of the many questions I know you have, questions you don’t know how or are afraid to ask. They make you feel overwhelmed, like sitting in Mrs. St. Pierre’s classroom every day, fidgeting nervously in your seat. You always get up during class to sharpen your pencil, and I know it’s because you enjoy the smell when they’re freshly-sharpened — it calms you down. So don’t feel bad if the other kids snicker or laugh when you smell your pencil. They just don’t understand.
You care a lot about what the other kids think of you. I know you hate going to the pool every week because you have to change in the locker room, and the girls make fun of your feet. This will cause you not to feel comfortable wearing flip-flops for many years, and you won’t be OK with wearing them again until you’re much older. It’ll be like that with a lot of things people say to you in school — their exact words will fade from memory, but the effects they have on you will last a long time. But don’t worry — one day you’re going to make friends with someone who really loves your feet, and will call your little toe, the one that didn’t grow in right, your “Lucky Toe.”
That’s something you feel like you could use a lot of right now — luck. You keep hoping things will get better, but they never do. I have some good news, though; you won’t lose that hope. No matter what happens, you’ll still be optimistic — foolishly, maybe, but when you’re older, people will tell you how wonderful it is that you are that way.
But I have to be honest with you: things are going to get a lot worse before they get better. You’ll be in junior high school soon, and you don’t know it, but seventh and eighth grades will be two of the worst years of your life. Once again: it’s not your fault.
You like to look at things outside the window — the trees and blue sky make you feel calm. One day you will be in study hall, and you’ll go right up to the window and stick your head out of it. That’s when someone will tell you to jump. Other voices will join in, and even after the teacher finally tells everyone to be quiet and calms things down, you’ll hear them in your head for a long time to come. Every day, someone will make you feel less. Not human. Unwanted. And you’ll keep your head down and take it, because no one’s going to tell you anything different.
But I will.
You’re not less, Amy. You’re more. More because you have to work twice as hard as everyone else to make your voice heard. You don’t know how to fight right now, except for when you lash out after not being able to handle the pain anymore, and then it’s you who gets into trouble, rather than your tormentors. They know how not to be seen, to avoid detection. You don’t. Even as an adult, you won’t quite fully master the art of subtlety, but right now, you’re bared to the world. Completely vulnerable. And your classmates are taking full advantage of that fact. They know how to hurt you in the worst ways, so they can get their kicks from your reactions. You can’t understand what they’re doing, and you just play straight into their hands, every time. Once more: It’s not your fault.
These days, your classmates call you names — “ugly,” “freak,” “psycho,” “loser.” “Retard.” They call you these things because they don’t know you, they don’t care to and they don’t want to. You’re trying so hard to force yourself into their world, with little to no success. But you will have friends one day, Amy. Better still, you won’t have to fight for their friendship — they will come to you. I know how unbelievable that seems, especially since you feel like no one wants to be around you at all, not even your parents. But you are loved, even if you don’t realize it. You just have to learn how to love yourself.
There are some things that you are good at, Amy. Like writing. You just started writing some poems, and were happy when you saw them published in the local paper (your mom and dad sent them in for you, just in case you were wondering how that happened). I have three words of advice for you: Keep doing it. Right now, you write because it’s an escape from the world around you, and you don’t care about being “good” at it. But one day you won’t just be writing for yourself — you’ll be writing to help other people. And your writing will help people, even when you don’t realize it. So you’ve got to keep at it.
It’s hard to think that you’re good at anything when people are constantly telling you that everything you do and are is wrong. In middle and high school, your fellow classmates will tell you to your face to kill yourself, and that no one wants you around, or would care if you were gone. Don’t listen to them. I know it’s difficult, and their words will go right into you, but they aren’t worth it. You are a good person, a person worth having around, and you’d make so many people sad if you were gone.
The world is going to need you when you grow up, Amy, so you have to get there. You have to make it through these dark days, because you’re going to make a difference in the future. Someday, people will want to hear what you have to say, and you won’t believe it at first. But it will be meaningful and wonderful. You’re going to have to take a lot of crap and go through a lot of pain to get there, but I promise you, it will be worth it.
My time with you is now growing short, young Amy. I hope that some of the things I’ve said have brought you comfort, or at least given you assurance that there is, indeed, light at the end of this tunnel. In short: things will get better. A lot of people will say that to you, and you’ll think that they’re just trying to make you feel better, but it’s really, honestly, true. You’re an incredibly special, talented girl, and right now you’re toiling in obscurity (as so many great artists do), but someday the world is going to see how amazing you are, and all you’ll think is, “Where were you people when I was younger?”
The future seems far away, almost impossible to think about, but don’t be afraid to think about it. You’re not even sure if you’re going to have a future, but you will. You will. And I will say to you now three words that you don’t hear very often (even when your mother says them to you). Three words that you’ll be desperate to hear when you get older, especially from a good-looking member of the opposite sex, but that seem very off in the distance right now: I love you. I love you, my younger, high-strung, uniquely wonderful self. And I’ll be here waiting for you. See you in 15 years!
Love and many, many hugs,
Your 26-year-old self
If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.
The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.
The Mighty is asking the following: Write a letter to your teenaged self when you were struggling to accept your differences.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.