Main Entrance Of Modern Hospital Building With Signs

In May 2009, I had a violent meltdown that lead to law enforcement and an ambulance ride to the ER. Upon arrival I was greeted by a screaming baby, which my ears could not tolerate. I covered my ears and began screaming in distress, and immediately I witnessed the ignorance, prejudice and abuse of my junior high and high school past crashing down on me in adulthood.

Several people were in the room asking questions like, “What’s your name?” “What meds are you on?” “Stop screaming, you’re scaring the lady in the bed next to you!” On top of this, the baby was still screaming, which I was reminded “isn’t its fault!” in a derogatory yell. I reminded the nurse through tears that I have autism and sensory processing disorder and cannot help my response, either. That brought a threat, “If you can’t be quiet, then we’ll have to give you Haldol. You can’t take Haldol? (I am allergic) I thought you didn’t want to talk to me. Why are you talking to me now?” When I refused to take it, she went to get security.

I picked up the phone and called my mom, remembering to dial 9 first, as I am familiar with hospitals. When my mom talked to the nurse, the security guards left. I reminded her it is her duty to know the basics of autism and not my responsibility to educate her.

After four hours, with my mom holding my ears each time the baby cried, the case worker came and spoke with me, made out a customary wellness plan, and then I was discharged.

How could this situation been handled differently? 


If you are a nurse or any other member of the medical community, you know the first rule of medicine is do no harm where there is no harm. De-escalate the situation! Don’t make a bad situation worse by being sarcastic or yelling. Find out why your patient is in distress. Do what you can to make them as comfortable as possible (even if that means simply not being a jerk). Take your patient seriously. If they tell you they are allergic to a particular medication, listen.

The nurse I dealt with was reported to her supervisor. I can’t stress enough the importance of having an advocate to speak for you if you are unable. This goes for everyone. Someone in your family should have a list of your meds, your doctors’ phone numbers and a copy of your living will if you have one. This person should be a primary contact like a parent, grown child or spouse, and ideally he or she should live near you.

Lastly, report abuse of anyone on the spectrum. Don’t settle for just an apology. I’ve been thrown out of another hospital because they couldn’t keep me from using the chain of command. I chose to report the abuse I witnessed and personally experienced as a patient.

If you are interested in learning more about law enforcement training efforts to help autistic people, here is a police training video. If you need to report abuse, Google who to contact in your area. In Illinois, you can report abuse anonymously here. You can also report abuse here.

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Thinkstock photo by monkey business images


Mom’s son with autism was given no-tie shoelaces because he was not able to tie his shoes.

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We recently went on a much-awaited and much-anticipated trip to India to meet our family. This was my son’s first trip in a long time — since he visited India three years back when he was a little over 4 years old. So I was apprehensive. For those who don’t know, from where I live, the journey to India can be anywhere between 20 to 25 hours long, with almost 16 to 18 hours crammed inside a plane. My son is on the autism spectrum, and my husband and I, on multiple occasions, used to get cold feet just thinking about the challenges that could arise. The long flight, the jet lag, the sensory overload, especially in terms of sound and a deluge of new faces… We were not sure how our son would respond to so many new experiences. Our fear was this might turn out to be a very negative experience for everyone. This is where we were completely wrong! If anything, this was a huge learning experience for us and a trip worth remembering. Let’s start from the very beginning:

The Flight

The most feared part of our trip. The long, arduous fight, tied up in a seat for an extended period of time. With the pediatrician’s recommendations, I was carrying a bottle of Benadryl. It could make my son a little drowsy during the flight and help him sleep through most of it. We did carry a few of his favorite toys as well — his iPad, his musical toy and a few straws — but we were pretty sure he would get bored of these soon and expected a meltdown of some sort. However, to begin with, we really did not need Benadryl. The dimmed lights and his body’s natural sleep cycle took care of most of his sleep. The rest of the time he enjoyed playing with his stuff, lying down in our laps, cozying up with us, and just getting our unadulterated attention. We all actually enjoyed this unusual family time more than we expected. Ideally, I would fret over his meals, but this time around I decided not to do that, and this helped ease the stress we often have around meal time. A day of disrupted meals was not going to affect his health. So long story short, the flight was a breeze compared to the apprehensions we had. We had a few rough moments, but then who doesn’t!

Lesson learned — something seems challenging only until you’ve tried it.

Jet Lag and the Saga of a New Bed

This is the part where, when everyone sleeps peacefully, you lie down and stare at the ceiling, and when others are up and about, you are walking in a daze. We knew the jet lag would go away in a day or two. What was a bigger issue was my son Vedant’s anxiety about sleeping in a new place. The light sleeper that he is, he would wake up suddenly, sometimes within minutes of sleeping, and throw up from the stress of sleeping in a strange bed. This went on for almost five to six days, during which none of us could sleep enough. Several times during this stressful period, we felt like taking the plane back home. But we decided to persevere. Instead of constantly trying to make him sleep, we tried to have more fun on the bed with him along with his little cousins. This helped make him feel safe and have a positive feeling about the bedroom. Soon he started sleeping better, and we were back on track.

Lesson learned — patience and endurance always pay.

Meeting Our Family

Amazing is how I would describe it. Vedant was not just affectionate, but also excited to meet his cousins. Back in the U.S., I’ve seen him around kids, and for the most part I’ve noticed him coil in a corner and keep away from everyone. However, I found him enjoying the company of other kids here. I believe this had a lot to do with how the kids interacted with him. They did not try to play with him, they tried to play like him. That got his attention and his interest. I saw him respond to a few of their questions, I saw the twinkle in his eyes when he was with them, and saw the child in him I have always longed to see.

This was so encouraging. There are ways to enter his world and to get his attention, and I learned it from little kids, who can so often be underestimated. I saw his cousins being proud of him and showing him off to their friends. I believe it made Vedant a more confident young boy who wanted to make his cousins just as proud. The extra attention he got from his family — uncle, aunts, grandparents — was phenomenal. He warmed up to them just as well. He likes deep pressure, so all the hugs that came his way only seemed to make him happy and seek more. The entire experience taught me so much about Vedant in terms of how to best work with him. He does not lack social skills. He just prefers a different kind of interaction. It’s us who may lack in our understanding of his needs.

Lesson learned — to know a kid, be a kid; there is no better way to do this.

A Whole New Setting

There was a lot that was new for Vedant during this trip, but he really took it all in his stride. The loud noises on the street bothered him, but he knew how to regulate himself instead of having a meltdown. Normally, a little bit of walking can wear him out. He would insist that we pick him up or else he would be cranky. There, we climbed more than 100-odd steps to visit a temple and had to go up a steep hill to see a waterfall, and he happily went along without complaining even once. Back home, we would not even have tried doing this.

I had believed that Vedant did not often notice us not being around. This was because, in the past, there had been occasions when his dad or I had to be away, but he did not really seem to look for us. So I was pleasantly surprised when he came looking for me in the kitchen, pulled my hand and said, “Mumma, come,” when he couldn’t see either of us in the room. I was so happy. I guess being in his “safe place” may not elicit his insecurities, but when he found himself alone in a new place, he felt the need to get one of us. This was such a great thing to know.

One of us, almost always, kept an eye on Vedant since it could be difficult for others to understand him. However, there were times when we got busy and let him be on his own. It was then we noticed him using his iPad’s TouchChat app for communication. Initially, we dismissed it as being random because he had never used it back home. However, over time we realized he was typing what he wanted to say, like going to the toilet, playing with a toy, or asking for a specific food item, and then he would come up to us and verbalize that. To say we were over the moon would be an understatement. We never knew he could use it the way he did. I strongly believe this happened because, unlike at home, our son was in a place where he did not know his way around, giving him the necessity to communicate using the app.

Lesson learned — sometimes we need to get out of our comfort zone to know what we are capable of.

There were many big and small revelations we had during our trip. A lot of what we had stayed away from doing in the past, we got to do back in India, especially because we knew we had a family around to stand by us. This gave us the confidence and the courage to try new things with Vedant that we had not tried earlier. This was my learning experience. For some, it could be a trip to a beach or a sleepover at a friend’s. Life gives us so many opportunities to learn and to rediscover; we just have to keep our eyes, ears and minds open for it. Our fears are our biggest enemies, and once we take a step towards facing those fears, there can be a whole new world on the other side. This trip to India was our family’s way of discovering what we are made of, and it has helped us see our son in a whole new light. He is capable of so much more than we could know. All our kids are!

Image via Contributor.

A version of this post originally appeared on Brain Droplets.

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I suppose I will not forget the 12-year-old girl who months ago caused me to suspect I was on the autism spectrum. Her behavior reminded me of creating my own world and talking to imaginary characters, at times pacing the floor.

I’ve lived with autism all my life, but I didn’t know its name until after the 12-year-old and I crossed paths. Now that we’ve been formally introduced, I am aware that it doesn’t leave my side. I recognize it playing its invisible role as I go about the business of living. It is my constant companion, and it is invisible to those around me.

I am sitting in a church classroom. I am a first-time visitor. It was no small task for me to come into the room where there was no familiar face. The people seem nice enough, though. But the hour is up. It is time to leave, but the teacher isn’t done yet. Her talking becomes static noise to me. I stifle my impulse to leave. I imitate the “proper” behavior of those around me. I want to “stim” — rock back and forth, boggle my knees, pace the floor — but that would draw unwanted attention. Finally, she’s done and the class is over. I head out the door breathing a tremendous sigh of relief.

I’ve played this scene countless times. My experiences are for the most part invisible. The turbulent storm with its pouring rain, lightning streaks, and thunder claps are all inside of me. I don’t announce to the group I’d rather flee than to continue pretending I am fully engaged. I try to stifle the impulse to stim. I work hard at pretending to be “normal” until I can get to that safe zone where I can take the mask off.

As far as I know, I learned to talk on the same schedule as my peers. I did well in school grade-wise. Since I wasn’t graded on my social interaction skills, that never came up. Some of my teachers might have suspected something but not enough of a something to warrant seeking a diagnosis of whatever that something was.

I suspect there are a lot of people who are living on the spectrum who don’t know they are. It took me 58 years, the right job as a special education aide, and a 12-year-old to introduce me to my lifelong companion who is no longer invisible to me.

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I once had a boyfriend who broke my heart. I thought he was my boyfriend, at least, but he thought otherwise. Am I “high-functioning” because I had a boyfriend? Am I “low-functioning” because my heart was broken or because I didn’t realize we weren’t actually an item? Am I more “high-functioning” because I’m autistic and had this relationship, no matter if we were actually together or not?

How confusing are the labels of high- and low-functioning? I just want to trash them, to be honest. The main definition of function is “to work or operate in a proper or particular way.” Who decides what is proper? Is it not completely subjective? Am I less “functioning” because I happen to be autistic and have bipolar disorder? Am I only less “functioning” during an episode?

The verbal world can be exhausting to me. I burn out easily and need to sleep it off before I can handle any more. This is because, compared to the average person, I process other people’s words slowly. Does this make me “low-functioning”? I have an above average IQ, though — does that make me “high-functioning”? If there are times I prefer not to speak, does that make me “lower-functioning” because I’m not living up to someone else’s standard of what’s comfortable and acceptable?

What I’ve written may have confused you a little bit. That might be because it’s mostly subjective, and questions like this cannot be answered in such a black-and-white manner. “High- and low-functioning” is black and white, while this world is colorful and full of very different people. Only seeing someone’s difference as being a negative is ignoring the brilliance of that person, and only focusing on someone’s “sameness” is ignoring the struggles that person might face. It dismisses the fact that what’s assumed is the need to adjust to someone else’s standard of what’s “proper.”

In short, I would just like to say that I think I am simply functioning. Maybe not to your standards, but my own. I may not be able to sing at all, but I can paint and draw, and that’s enough for me.

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