5 Ways Employers and Businesses Can Become More Autism-Friendly

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How can employers and businesses become more autism-friendly? I thought about this after the human resources department at the hospital I work at failed to post a reminder for due dates for their CPR and Non-Violent Crisis Intervention (NVCI) training. HR used to remind hospital staff of the due date. But this past year, I was late on my NVCI because HR didn’t send out a reminder.

I received a final written warning because my NVCI had expired. I met with the new director of human resources and explained to her how autism causes me to follow set patterns, and how HR in the past informed me of my due dates. The new HR director looked at me and said, “Is it safe for a person with autism to be working in a hospital with patients? I’ll have to inform the director of nursing that you have autism.”

I was furious and I felt totally humiliated, but with full restraint, I held back my tears. When I was hired seven years earlier, I informed the HR director and my supervisors about my Asperger’s and turned in documentation on my disabilities. Instead of transforming into a honey badger, I gently educated her on autism and explained my mind’s unique neurological processing system.

So how can businesses become more autism-friendly? For the answer to this question, I interviewed Dr. Donna Beegle, whose daughter, Juliette, has nonverbal autism. They were escorted from a United Airlines flight in May after their plane made an emergency landing in Salt Lake City due to a passenger with “behavior issues,” news outlets reported. I also received feedback from my Facebook friends who have children with autism and researched books and articles about autism.

1. Learn basic information on autism and sensory issues.

Two great organizations for information and resources are Autism Society of America and Autism Speaks.

2. Ask the person with autism, parents or caregiver how you can best offer accommodations for their needs.

Dr. Beegle shared, “We always carry a travel go-bag for Juliette, but on this occasion after a rough day, she needed warm food to soothe her. A little warm rice is all it took.”

3. See the individual with autism as a person. Get to know him or her.

Jerry Newport, author of “Your Life is Not a Label,” wrote, “I know of nobody who is purely autistic or purely neurotypical. Even God had some autistic moments, which is why the planets all spin.”

Also, the articles on Juliette failed to personalize her by telling readers of her love for Disneyland and her musical talent. Dr. Beegle stated, “Juliette loves to hug random people in the mall. She hugged an elderly woman, and the woman joyfully responded, ‘I just received a hug from God.'”     

4. Have compassion for the family and child with autism.

Traveling and shopping can be extremely difficult for both the parents of a child with a disability and for the child. “Taking Jack and his autism on vacation is like bringing a fragile, anxious little fish out of a tiny backyard pond and throwing him into the ocean,” Carrie Cariello wrote on The Mighty. “You just keep your fingers crossed that your child can handle a different schedule and change in scenery without getting swept away in a riptide of tantrums, meltdowns and anxiety.”

5. Use universal precautions with all people — not only those with visible or physical disabilities.

Universal precaution is an approach used in regard to infection control to treat all human blood and human body fluids as if they were known to be infectious. Businesses can use universal precautions by treating every customer or employee as if he or she might have a hyper- or hypo-sensitivty to sound, light, touch or taste.

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The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? 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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To the Nurse Who Asked, ‘What Happened to Her Face?’

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Dear nurse who thought I was sleeping,

“What happened to her face?” I heard you ask — and not in a friendly tone.

Still groggy after the procedure to help with my neck pain (I was in a car accident two years ago), I briefly opened my eyes. I was still in the procedure room and your team had just adjusted me from my stomach and returned me to rest on my back. The anesthesia I’d been under was wearing off in a record time.

Closing my eyes, I thought, “Did I just dream the nurse’s question? I must have.” But it my gut, I knew it hadn’t been a dream. As I woke up, I became more confident in what I heard you say, and it made me feel terrible. One of the anesthesiologists who was also in the room confirmed I heard her correctly.

“Oh,” I told him, “you can tell her it’s just a birthmark. I don’t mind people knowing what it is. I actually write about my birthmark and story on my blog, and I’m a public speaker on the issue.”

My heart felt heavy. I felt frustrated. I was hurt. I was tired.

Today, a week later, I finally talked directly to your manager. I told her I was hurt and frustrated, and I was there for my neck not my face. Your words, and the attitude in your tone, were not the first things I wanted to hear after a painful procedure. In fact, that’s the last thing I wanted to hear. She understood and was equally disappointed in the situation.

She explained to me that when I entered the room to have my procedure, I had one nurse I met beforehand. When the procedure was finished and I was prepping to leave the room, I had a different nurse due to a shift change. I had you. You had no way to know when they turned me from my stomach and onto my back, my face wouldn’t be the norm. You didn’t see much about my file beforehand, nor were you informed about any medical conditions that I have. You went in blind, without any “warning” about my face.

I’m guessing you probably thought I was still asleep. You probably thought I wouldn’t hear your words, I wouldn’t remember them. But I was awake. I do remember.

It’s possible you meant your question, “What happened to her face?” to translate to, “Is she OK? Is she having some kind of reaction?” But it didn’t. Not with your choice of words and the tone of your voice. Instead, it translated to an unprofessional, careless attitude and sounded as though you were just being nosey.

You’re not the only one to choose the wrong words on occasion. I’ve been asked if my birthmark was face paint and an allergic reaction to the flu shot. During one hospitalization, another nurse (while I was awake) rudely asked my attending nurse, “What happened to her face?!” When I started to react, she pretended like I wasn’t awake and sitting in front of her when she continued to ask my attending nurse, “Oh, is it something she’s had for a while?” She never addressed me. She never talked to me. I was invisible.

A few weeks later, during a time when I was incredibly sick, a receptionist recommended I switch makeup brands so I can hide my birthmark better since “it probably bothers other people more than it bothers you.”

That’s just in hospital settings alone. I’m excluding experiences at the dentist’s office, at college, online, and when I’m out with friends. Knowing the words that have been said about me and to me while awake, I don’t want to know what may be said about me behind closed doors — or when I’m asleep having my gallbladder removed or during a third ankle surgery.

Your words hurt, but they inspired me. That’s why you’ll probably see me again in your department in the weeks to come. This time, I’ll be there for a different reason: To talk about my story, to explain situations I’ve been in and why my experiences are not OK and why. I’ll be teaching you and your coworkers better responses and friendlier ways to address certain issues. I’ll also be reminding you I’m more than just another patient, I’m also human — just like you. And just like you, I have a story. I have feelings. I’m more then whatever “happened to” my face.

Please know, though, I won’t single you out. In fact, I don’t even remember who you are. Although I blog about my experiences, I probably wouldn’t be able to recognize the people who created the experiences. I strive to remember the situations, the stories, the quotes — but work equally as hard to forget who said it. Who said it doesn’t matter, what was said does. Your ability to grow and learn matters even more.

You’re not the first person to say hurtful words. You’re not the last. But you can learn. I can’t change my appearance, but you can change the way you handle situations, your attitude, and the words you choose. You can remember all your patients are more than just an ID number waiting to be “serviced.” You can remember patients aren’t always asleep, regardless if their eyes are closed.

crystal hodges

A version of this post originally appeared on The Travelin’ Chick.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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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This Adorable Photo Is Crushing a Stereotype About Tic Disorders

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An adorable picture is making a big statement about tic disorders.

Lora Scantling and her 6-year-old daughter, Camdyn, live in Yukon, Oklahoma. Earlier this year, Scantling noticed her daughter consistently coughing and clearing her throat, even though she wasn’t sick. In June, a neurologist diagnosed her with chronic motor tic disorder, a condition characterized by quick, recurring movements or vocalizations.

It differs from Tourette syndrome, which includes both motor and vocal tics. Scantling told The Mighty she frequently sees people confuse the two and assume anyone who has a tic disorder also lives with coprolalia, the uncontrollable use of obscene language and a common symptom of Tourette syndrome.

So Scantling, a professional photographer, decided to help raise awareness about Camdyn’s disorder through photography. On July 2, she posted the photo below to her business’s Facebook page.

Camdyn
Photo credit Scantling Photography

“Whenever I tell people about [Camdyn’s] disorder, about half of them ask me if she cusses,” Scantling wrote in a post accompanying the photo above. “She and I together are making a big push to help educate others.”

Scantling says she hopes her project will help people to understand and respect those who live with tic disorders, whether they are extreme or mild.

“Just like with autism, tic disorders are a spectrum disorder, meaning there are many different levels,” Scantling told The Mighty in an email. “I hope this helps others become more aware and for [tic disorders] to become more accepted, whether the person who has it is cussing or just grunting. Don’t make them feel bad for something they cant help.”

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Read Scantling’s entire Facebook post here.

To see more of Lora Scantling’s photos, visit her website or check out her Facebook page.

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5 Ways People With Sensory Sensitivity Celebrate the Fourth of July

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Here at The Mighty we were discussing how to help our readers with sensory sensitivities in celebrating the Fourth of July. We decided to put the question out to our lovely Facebook community, asking:

“For those who live with sensory overload, what are some ways you or your family celebrates the Fourth of July?” 

From here, we compiled five tips from our Mighty readers into this video. Enjoy!

Note: All activities require adult supervision.

1. Get glow sticks and sparklers.

You can experience the bright colors of the Fourth of July in a controlled setting. Sparklers are fun to watch and glow sticks really light things up.

2. Use noise-reduction headphones or earplugs.

Many readers shared that their children were able to see the colorful fireworks without all the loud booms. (Colored earmuffs are an especially fun accessory!)

3. Watch fireworks from the comfort of your own home.

If you don’t want to deal with the crowds, you can watch from a distance or on television, with the volume lowered.

4. Create your own explosions.

Some readers say they make their own Fourth of July volcanoes. You can use water bottles, baking soda, food dye, and vinegar.

Mentos and Coca-Cola also work perfectly for a massive (silent!) explosion. Check out these volcano recipes here.

5. Fireworks aren’t a must.

BBQ, swimming, festive foods and decorations are great, low-key ways to celebrate the 4th. Staying inside and watching a movie is a cozy alternative.

Have a safe, Happy Fourth — and add your suggestions to this post!

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When My 8-Year-Old With Bipolar Disorder Asked if He Could Dye His Hair Blue

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He’d just spent three weeks at the Yale Children’s Psychiatric Center. He was so excited to come home. He’d been there over Christmas break. It was a little disappointing, but we made the best of it.

When he finally walked through the door, carrying bags full of donated gifts, he looked at me and asked, “Can I dye my hair blue, Mom?”

I thought for a moment.

First, of all the reasons I should say no. What would his school say? I was pretty sure it was against dress code. What would other parents say? Would it damage his hair? Would it set a bad precedent? Would he ask for piercings next? Tattoos?

Then I looked at him — really looked. He was 8 years old. He had just been discharged from his seventh psychiatric hospitalization. Life is hard for Mateo. So little makes him happy. So little brings him joy. BMX bikes, the arcade, the rare movie he connects with… Was a little package of hair dye and some disapproving looks from strangers such a big deal if it gave him a moment of sheer joy? His friends at school knew he’d been to the hospital. They’ve seen him kick the wall in the hallway. They’ve seen the ambulance come. If I sent him back to school after winter break with blue hair, maybe he wouldn’t be known as the weird kid. Maybe he could be the cool kid — the cool kid with the cool hair.

Twenty-five to 50 percent of people with bipolar disorder attempt suicide. When I think of that, coupled with the tears I’ve watched him shed because it’s so hard to be Mateo, it seemed like a no-brainer.

Life is too short to not have blue hair if you want it.

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What My Son With Angelman Syndrome Teaches Me About Standing Out

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This week has been a week of feeling, well, different from the rest of the moms. Of being acutely aware that Rufus is different from the rest of the toddlers. Of feeling like we stand out and wishing just for a second we could blend in.

I realized early in life I stood out from the crowd. As literally the only person in my primary school class with curly hair, I was brunt of all the curly hair jokes. As a teenager I did everything I could to change my hair so I could just blend in. Despite all my efforts, it kept growing back curly. It seemed there was nothing I could do to stop it

Maybe I grew tired of trying or maybe I just grew up. Whatever it was, one day I just decided I would fully embrace my curliness. I’m glad I did. 

Fast forward to present day. I live in a vibrant, diverse community within a huge and creative city where having curly hair is completely normal and no one really stands out from the crowd. There are so many versions of “normal,” no one looks twice at anybody. Finally, curly-haired me blends in.

But, recently I’ve noticed that old, familiar feeling of being desperate to blend in creeping back in. Only it has nothing to do with the way I look anymore. It’s about the boy I spend all my time with and the increasingly obvious syndrome he carries around with him. 

When Angelman syndrome officially entered our lives 9 months ago, blending in ceased to be an option. Life became about standing out, feeling different and unusual. It was pity-looks, the questions and then The Conversation explaining the ins and outs of the syndrome and what the future holds for him. There’s no more blending in now.  

The morning I got in the car after Rufus’s first trial swimming lesson, I felt a big old lump in my throat. The instructor and I realized early on the group wasn’t right for Rufus. Not only did his tiny, wobbly body look so different to the other normal-sized boys who were also nearly 2 years old, they could all follow instructions, walk, talk and were beginning to move towards independence in the water.

Don’t get me wrong, Rufus had a wonderful time. His continual beams, giggles and face grabs reassured me that he was having the time of his life. Anyone who knows anything about Angelman syndrome knows that water is a winner every time. But whatever the teacher was trying to get him to achieve, he wasn’t even remotely interested. So at the end of the lesson, as we started making our way out of the water she said, “Just hold on, I’d like a quick chat after everyone’s gone.”

Like any parent who is grabbed by the teacher at the end of the day, I knew he’d done something wrong. 

And it was then that she explained she felt it was right to put him into the lower group, the group for 6-18 month olds. He’s 21 months old. Her reasons were absolutely valid and I agreed with everything she said. In fact, I would have suggested the same. He couldn’t follow instructions and wasn’t anywhere near independence in the water. But I felt sad. I felt sad that my boy was different. I think the instructor could tell. 

“The last thing we want to do is to make you feel like you stand out,” she said. 

I explained away my feelings and responded with, “Oh, it’s okay, I do anyway. We do, I mean. We always will. That’s part of the deal with having Angelman Syndrome.”

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My “normal” is actually quite unusual for most moms. Every “normal” thing we try to do will always look different. Here was the rest of my “normal” week: Phoning his pediatrician for a new prescription; racing across town to collect the prescription in time; meeting a mom who looked at me strangely when I told her he was 21 months old; meeting with a health visitor and sleep specialist; racing across town again to deliver the prescription; being kept awake by him for two or three hours every night; meeting with a speech therapist for the first of six pre-language play sessions; collecting the prescription; buying shoes and realizing his feet are too big; feeling annoyed because there’s no point in spending loads of money on proper shoes when he’s not even walking; having The Conversation with a lady in the park and tripping over my words; being seconds away from calling the ambulance after he started going blue from choking on a piece of pear.  

Our regular Angelman Syndrome moments are stand-out moments. I know we are different and I know this is the way our lives are, I just wish we could blend in sometimes. How I wish I could go to a swimming lesson and watch my son follow instructions like the other boys. How I wish his pediatrician’s phone number was not one of my most frequent calls this week. How I wish I could experience a regular toddler meltdown while shoe shopping. 

But wishing will get me nowhere. Wishing to change genes is pointless.

But Rufus is absolutely pleased as punch to be the person he is. He’s here in the world living to the fullest. As far as I can tell from the ear-to-ear grins he gives us every day, he doesn’t wish to be different. If I’m going to learn from anyone about how to feel comfortable standing out in a crowd, I’ll learn from him. But I think I owe it to him to do better than just feel comfortable. I need to learn how to feel proud to be his mom in every situation, in every encounter with a stranger, every time I receive a pity-look and every time I so desperately feel like blending in. I need him to help me wear my Angelman Syndrome Mum badge with pride. I need to feel at peace with the way I am, the way we are and the way we’ll always be. And maybe, if I let him, this could just be the making of us. 

A version of this post originally appeared on Lucy Hasler’s site.

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