10 Things ER Staffers Should Know About Autism

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I’m autistic and also have a mental illness. I’ve had to go emergency rooms in hospitals a number of times. The experience has always been traumatic and unhelpful. I’ve experienced a lot of paternalism, been treated as if I’m a naughty child and invalidated in many other ways.

In some cases, these experiences have resulted in me avoiding seeking treatment for mental and physical health complaints, which in fact did require urgent treatment.

Autistic people — both patients and visitors — will be anxious and scared in the emergency room. Sometimes autistic people will be unable to speak or clearly express what they’re experiencing. 

Here are 10 things that could help ER staffers to assist autistic patients, visitors and support people:

1. Don’t assume autistic patients and visitors are being deliberately difficult. Autistic communication tends to be different from non-autistic communication, which can lead to misunderstandings, even when the autistic person isn’t in a highly stressful situation like accessing emergency health care. If we seem difficult, please do not assume we mean to be.

2. After their medical status is confirmed as not requiring immediate emergency intervention, ask the autistic person what they need, what they think would help and how you can assist. If their requests can’t be accommodated, explain this to them and the reasons why.  Some people may prefer to communicate via typing or facilitated communicate device, rather than verbal communication. If this is the case, find a way to accommodate their needs.

3. For autistic people, emotional, sensory and/or information overload can lead to a meltdown. The ER is often an overwhelming place. It has people coming and going, often with visible injuries, odd smells, glaring lights and confusing information. Being unwell enough to be present at the ER and having a meltdown is unpleasant for the autistic person and possibly other people in the ER who might be frightened.

The overload which leads to a meltdown can be addressed by decreasing the stimuli causing it. Often this can involve simple measures like explaining what’s going on as well as you can and providing a quiet space.

If someone does have a meltdown, trying to intervene will almost certainly exacerbate it. Leave the person alone. If you have to say something, stand back from the person and offer supportive, calm comments. Do not try to physically restrain the person or tell them off for their “poor behavior.” A meltdown is not poor behavior or a way to seek attention — it’s a response to overload.

4. Waiting for an indeterminate amount of time is stressful to almost all autistic people and any relatives with them. If an autistic person asks you how long they will wait for treatment or to be taken to a bed in the ward once the decision to admit the patient is made, they aren’t being difficult or pushy, they’re just anxious because they want to understand how long they will be there for.

Respond as accurately as you can. Even a little bit of information such as, “We are quite busy tonight, so it may be a few hours,” is more helpful than no information. This information is also useful to relatives waiting with the patient. They may choose to get some food or go home and sleep if it’ll be a long wait.

5. Some autistic people don’t have family, a partner or friend to support them and may attend the ER alone. Consider what they may be going through: They’re unwell enough to seek help in a hospital, which is probably not a place they would choose to attend otherwise. They’re in a situation that can be triggering, unfamiliar and scary. A staff member periodically coming up and asking them briefly if they’re OK or offering a hot drink can make a huge difference. This doesn’t need to be time consuming,

6. Many autistic people experience sensory issues and overload. Bright lights may be overwhelming, and unfamiliar smells, medical equipment making unexpected noises and undergoing uncomfortable medical procedures administered by strangers can be quite traumatic. Consider making some of the waiting room space and beds on the ward sensory friendly. This doesn’t need to be onerous and can simply involve using incandescent lighting in an area of the waiting room, screening off an area and providing fidget or sensory toys.

7. Medical staff should explain as clearly as possible to autistic patients what is happening. If possible, provide the likely duration for results of medical tests being returned. It’s OK to qualify these statements by saying the time may vary, but having some kind of ballpark timeframe and reason for medical tests and procedures can reduce anxiety.

8. Autistic family and friends may be highly anxious about the person they’re supporting.  Some practical measures to assist autistic friends and family of patients are quiet areas in the waiting room, somewhere to buy food since many autistic people are sensitive to being hungry, which can trigger stress or meltdowns, being given approximate waiting times and being told what’s happening as much as possible.

9. It may help to develop a tip sheet to provide to autistic patients and visitors, which includes information on the triage process, how to access assistance if overloaded, what the expected behaviors are in the ER, where to access Wi-Fi or charging points for devices and where to go to provide feedback or complaints. Staff training around autism can also be very helpful.

10. Consider having a supply of cheap items to reduce sensory overload available in the ER for patients and support people who need them: ear plugs, sleep masks (especially for those in ER overnight) and a small number of fidget toys.

Read a related story about a helpful phone app for people who can’t speak during an emergency.

With sincere thanks to Penny Robinson for her contributions to this article.

What’s a part of your condition you live with every day that others might not see? Explain what that experience feels like. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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To the People Who Think I 'Sugarcoat' Our Experiences With Autism

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mom and little girl with autism at the pool Listen up, and please listen carefully. I have something important to say.

Or, don’t listen. Don’t read any further, if you don’t want to. Maybe you don’t care what I have to say, and that’s OK, too.

I’m speaking to all of you, though.

I’m speaking to all parents to children with autism who have chosen to share your journeys. I’m reaching out to all of you, who, after the day has long since taken every drop of energy in your reserve, dig even deeper to live the day all over again just to let someone else know they’re not alone. What a profound, selfless gesture it is to do so. Your unabashed honesty brings clarity to so many, yet you face scrutiny from other parents for not being “real” enough. I know this because I’ve been there, repeatedly.

“Too cute and sugarcoated” was one bit of feedback I received on a recent piece. “… don’t downplay its seriousness with hearts and rainbows” was another. I accept what I write will not resonate with everyone, but this was just disheartening. With that in mind, I’m going to offer an explanation in regards to the manner in which I choose to convey the messages I share. In doing so, I’m speaking directly to those of you who have chosen to pass judgment.

Just as my child on the spectrum does not fit into a particular mold, neither do I! There is no “one size fits all” manual for maneuvering through a life that includes autism. Therefore, there should be no expectation among parents in the same community in regards to what is deemed a “realistic” or “reasonable” outlook for a child’s future.

My daughter and I have a lot of less-than-stellar days. On these days, I have moments where I cry alone because I feel completely inadequate. However, hidden between those tumultuous moments have been some real moments of pride, inner strength, and pure joy. I write about these days, these experiences, as a whole. I don’t omit reality and write fairy tales as many have claimed. I do deliberately choose to focus on how these experiences have made me stronger and more capable. If that’s not your cup of tea, I accept that. What I do not accept is the notion that I’m misguided because the tone of my writing is too positive.

I have three children. Someday, they will undoubtedly plug their names, or mine, into a search engine. I want the results of that search to show them how much this experience has taught me as their mother.

The writing I choose to share is not “too” anything. It is my own. Writing is therapeutic. Just as it can cleanse the soul to vent, it can build confidence to write a positive message. I share my journey because I believe the lessons I learn may motivate others to push through. There’s nothing sugarcoated about it. My daughter inspires me, and I’m excited to watch her grow.

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The Story of 'Not Quite' When You're Parenting a Child on the Autism Spectrum

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I’ve been parenting a child with autism for almost 11 years now. For every one of those 11 years, I could have told you there was something different about this child, but it took almost six to find someone to put a finger on just what it was. The thing about parenting a child with autism is it is a never-ending story of not quite.

In the beginning it was, “Well your son has some delays, but I think he’s just not quite behind enough for it to be anything serious…” When he was 4 a doctor told us his lack of engagement and anxiety was probably depression and he should play outside more.

boy with autism climbing a tree

As he grew, it became harder for others to brush off his quirks with other explanations. Even after his diagnosis, however, we still had the problem of not quite. Now he was not quite ready for a regular classroom, but he did not quite qualify for much in the way of extra help through the school.

Through the years, he has mastered most of the self-care skills he needs, just not quite at the age he should have. At the same time, as his mom, I did not quite fit in with the other moms of children with special needs. One family member even outright told us she just didn’t quite see it.

Those who are the most invaluable to us as a family are those who see my son’s could bes instead of his not quites. The therapists who want to improve what he has rather than declare it good enough or better than other kids on the spectrum. The doctors who want us to have referrals for private therapies he can’t qualify for in school and who help us tell the difference between autism characteristics and other challenges. The nurse and social worker who see the places his struggles are affecting our family and offer resources for solving those issues. The teachers and coaches who mentor him patiently and include him even though he processes things in different ways.

All of these people have seen his could be.

Last year after a long evaluation meeting with a new psychiatrist, she noted one of our son’s strengths is his active and engaged parents. Of all of the invaluable information she gave us about our son’s diagnosis, the most important thing she did was remind me no mater how many people see his not quite, the most important person to see his could be, is me.

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Why the R-Word Is Hurtful, Even When You're Not Saying It At or About My Child

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The second you become a parent, a protective instinct kicks in. Your baby is your whole world, and you would do anything to protect her. You’re a mama lion, and you’ll bite the head off anyone who messes with your cub, directly or indirectly.

As a parent of a child on the autism spectrum, I am on constant high alert. I know the ignorance is out there, lurking in the form of a glaring stranger when my child stims to keep herself calm, or an uneducated youth making an insensitive comment.

This is the indirect harm I am referring to. Insensitive comments can be hurtful, even when your child is not within earshot. This happened to me a number of years ago at work when my daughter was young and long before I had my son . My crew was milling about, waiting for the OK to start our work day. A few of the guys were joking around, calling each other names. One asked, “Why do you call him that?” to which the first responded, “Oh, because he’s [so and so’s] retarded brother.”

I didn’t hear the rest of the conversation or the crude noises made afterward because at this point I was so angry I was seeing red. It may not have been directed at myself or my daughter, but to me it didn’t matter. Language like that is a direct insult to my baby and all individuals like her. I took several steadying breaths, turned around and snapped at them to watch their mouths. There was a momentary stunned silence and a chorus of mumbled apologies, but the damage was done. Not only was I fuming, but I was also devastated. Why would they make such harsh, insensitive comments about people like my little girl?

It chewed away at me for a few hours until I went to my boss on the verge of tears and reported it. My boss was understanding. All involved parties were dealt with accordingly, which brought me a sense of satisfaction, but not a sense of closure. It still hurt. Language like that lead people to believe the differently-abled are sub-human and not worth treating with respect.

With the prevalence of autism and other developmental and intellectual disabilities, it surprises me people still use the word “retarded” so freely. And almost every time it’s used, it’s in a negative connotation. It’s used to insinuate someone is beneath you in lines of intelligence and can’t possibly understand because they are too “stupid.”

The media is worse. In shows like “Family Guy” (which I find myself liking less and less), the R-word is depicted in the worst way — one episode uses it to reference an autistic child in a helmet and protective gear, slurring his words and petting Brian the dog too hard, causing Brian to bite him on the hand. It’s meant to be funny, but in reality it is insulting and demeaning. The writers and creators of the show should be ashamed.

When I hear a young person use the word today, I often then hear, “Oh, they’re young, they don’t get it,” or “They’re just uneducated,” in defense of their ignorant actions. Well, I am sorry, but those are just not valid excuses anymore. The resources available and coverage of advocacy organizations on the news  are plentiful, so there is no reason for anyone to not understand the R-word is hurtful, harmful, and should never ever be used. Period.

You see what I mean about protective instinct?

Image via Thinkstock.

Take the pledge! Sign up to support the elimination of the derogatory use of the R-word from everyday speech and promote acceptance and inclusion.

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What Pokemon Go Taught Me as Someone on the Autism Spectrum

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One of the biggest struggles I deal with when it comes to my mentees who have autism and other special needs tends to be focused on video game “obsessions.” This often means staying indoors for long periods of time without getting much exercise, time outside, or chances for socialization with peers. When I give talks at schools and to parents about growing up on the autism spectrum I talk about how some people with autism get focused on a key interest for a long period. When this happens, it could become their only interest. Video games can become that only interest.

Then out of nowhere Pokemon Go came out, and everything changed.

My mentees, who had loved going on their Nintendo DS to play new versions of the Pokemon game were now downloading this app on their phones and going out to play. It was incredible. Xbox and PlayStation 4 had been put aside for sunshine and exercise.

The more they played, the more positive reinforcement they received every time they were able to catch a Pokemon. They told me the “experience points” they received made them feel good about themselves when they were able to level up. Later, I would learn several of them were meeting with their peers to go to their local parks to hang out and catch Pokemon together.

Growing up on the autism spectrum I loved role-playing video games I’d played on my Gameboy or PlayStation 2. If it wasn’t for my other interests in things such as sports and theater, I could have seen myself being stuck on that activity for even longer than I was.

I downloaded Pokemon Go myself to see what the buzz is about, and I have to say it’s made me feel more positive every time I’ve catch a new Pokemon.

Going forward, I hope I can encourage my mentees in high school during these summer months to consider playing Pokemon Go as long as they have other activities to fill out their schedules.

Through moderation, I have seen this help expand my physical activity and and lower my anxiety. For younger kids on the spectrum, I’d encourage parents to start doing local walks in their areas on weekends with other parents in their schools and neighborhoods to see if there is an interest in starting a “Pokemon village.”

So enjoy the viral sensation that is Pokemon Go! Not everyone is going to love this, but it means the world to some individuals out there.

You can read a version of this blog at Kerrymagro.com.

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When My Autistic Grandson Taught Me How to ‘Fly’

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I am told most autistic kids like order. They place objects in neat little lines and carefully group things together according to size, shape or color.

My grandson, Noah — not so much.

Noah likes the complete opposite of orderly. If he sees a neat little line of anything, it must be destroyed. Every cabinet door or kitchen drawer must be opened.

Every refrigerator magnet must be pulled down to the ground, and every box must be emptied. It seems to be his mission. As soon as he walks into the kitchen, he checks the refrigerator for magnets. They should not be there, and if they are, they must come down — all of them. 

Needless to say, his playroom is usually a mess. It’s almost pointless to try and clean it. We have to clean while he’s asleep and then pray he doesn’t notice when he wakes up.

Having said all that, there are things Noah does that I try to learn from every day, like the fact he’s not a rigid person. He’s actually pretty flexible and goes with the flow. He goes where we go without any complaint, and if his dinner is a little late or his nap time is a little off schedule, he’s OK with it. I like that in a person.

He never throws tantrums; he usually gets what he wants by being patient with us and trying to point or sign. And if that doesn’t work, he will settle on something else. I think we should all be more like that.

He really wants to interact with us; he pulls us to his playroom or hands us his puzzle pieces to play, and he knows we will follow his lead. Another prime example of how adults should live — show someone you love what you want, or need, and then lead the way to get it.

But best of all, when Noah is happy, everyone knows it. He runs in this out-of-control kind of way with his arms raised in front of him like they’re expecting his little legs to go faster (even though they already seem to be going way too fast), laughing and screaming the whole time. It’s like he’s just on the edge of out-of-control, but somehow, against any logical explanation, controlled.

And then, sometimes, while he’s running in this half-controlled/half-uncontrolled race around the living room, he will throw his head back and close his eyes. It’s amazing because he usually rounds the corner without bumping into any walls or furniture. He’s just — flying.

Can you see him?

His eyes closed, his head back, his arms out in front to guide him, running at full speed, rounding the corner as if his eyes were wide open — laughing and flying.

I see it every time I close my eyes at night. It’s one of the most beautiful things about Noah.

I mean, sure, he’s messy and loud and basically noise with dirt on it, but what little boy isn’t?

It’s his reckless abandonment.

His complete lack of fear.

The trust he has in himself to get around the next corner, with his eyes closed, like he’s flying, without a care in the world — that’s what’s beautiful about Noah.

And then I think, I suppose if he can do it, I can try, right?

I don’t know what’s coming around the next corner, and I pretty much feel blindfolded myself. I would love to be able to do that — to fly.

I wonder if we all could feel like that at some point in our lives — that feeling of wanting to fly and just being able to trust in ourselves, in God, and know we can round that corner, blindfolded, and still be all right.

Well, I’ve been thinking maybe we could all learn a lesson from the little blue-eyed wonder boy who seems to be flying around my living room.

Trust. Fly. Close your eyes, throw your head back, don’t forget to laugh and then go for it.

Because he looks pretty happy to me.

A version of this post first appeared on G-Maw and Noah.

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