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With One Question, My Autistic Daughter Changed What I Knew About Empathy

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There is a widely held belief that those on the autistic spectrum lack empathy. It is often referred to by technical names such as “lack of theory of mind” or even “mind blindness” — both meaning a person with autism appears to lack the ability to understand the emotions, thoughts and actions of others. In other words they find it very difficult to put themselves in another person’s shoes. Some examples of this could be laughing at someone who is clearly upset, saying things that could appear as socially inappropriate, or misinterpreting jokes.

A few nights ago though my autistic daughter said something to me about empathy that has taught me so much.

We were reading a book together before bed. It was one of her reading books from school and from a well-used reading scheme. At the end of the story there are some basic comprehension questions, and this night I decided to ask her them.

Part of the story involved some children hiding under a staircase in the dark as a villain came searching for them. The children had to stay quiet to avoid being caught. The question read, “How do you think the children felt when they were hiding from the villain?”

As an adult I thought this would be pretty obvious. But my 7-year-old daughter’s answer was nothing like I expected.

She took a moment to think. Then she looked up and said quite simply:

“How am I supposed to know that, Mum? I can’t ask them!”

What to many would be a fairly typical response from a child with autism actually made me think.

Much of what we see as empathy is actually assumption. The Cambridge dictionary defines empathy as “the ability to share someone else’s feelings or experiences by imagining what it would be like to be in that person’s situation.”

We have to imagine what another person might be feeling. We base our opinions on our own experiences and feelings and assume the other person could be feeling the same. We are guessing!

My daughter struggles with social imagination. But that does not mean she doesn’t care. It does not mean she has no sympathy or feelings towards others. She just doesn’t want to assume, so she has found the perfect way to overcome that: ask them how they are feeling.

How often in life do we assume someone is sad or lonely just because they are sitting by themselves? How many times have we mistaken a smile for happiness? We are all unique complex human beings with complicated emotions and feelings. We deal with life events in very different ways. We can say we empathize with someone based on the fact we imagine they feel how we would in the same position. But in fact they could feel completely differently.

While it may be socially inappropriate to ask someone at a funeral if they are sad, there are times when asking others how they feel is much better than assuming. Asking enables them to express themselves and connects us far better than presumption does.

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I thought I was pretty good at empathy. I would have said those children were frightened or worried, but if I asked them they may have actually been excited, cramped or even thirsty. As my daughter said, how are we supposed to truly know if we don’t ask?

This week I have found myself asking others simple questions rather than presuming I know how they could be feeling: How are you doing? How are you feeling? Are you OK?

Many of the answers are nothing like I would have imagined.

My daughter may struggle with empathy in some ways, but she has taught me so much about it in ways I would never imagine.

Empathy is wonderful, but sometimes asking how someone truly feels is even better.

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Why I Fear Receiving -- or Not Receiving -- an Autism Diagnosis as an Adult

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I’m going to admit it. I’m scared.

Not the ever-present anxiety over the world in general, but truly scared. All journeys begin with a single step, and today I took one that felt as heavy as it was important.

Today, I booked myself in for an autism assessment.

What frightens me most? That the diagnosis will come back true, or that I will return to the limbo of undiagnosed symptoms I don’t understand? Both. Autism is a heavy word. It comes with societal connotations of behavioral problems and disability. I will be labeled “high functioning” because I can eat and speak and shower myself without assistance, and overestimated in my ability to function. I struggle daily in the most invisible ways. My life has been a steep learning curve, a constant development of rules and reactions through trial and error. I have tried almost every tactic to fit in with others, even blending myself so far into the background I began to lose the parts of me that are unique and special.

What ability I had to express happiness and anger I smothered in an effort to not be troublesome. I didn’t ask for help because I feared being a burden. I twisted myself into a figure I believed was more acceptable than who I really am. Someone who abided by the numerous and confusing rules.

I pushed myself beyond the limits to appear more social, tolerated situations that caused me distress because I felt too guilty to escape. Agreed to things I did not want, made changes that did not suit me, perfected the art of a still face and body. I have excellent control of myself. I can hold the pieces together until I’m alone, but once I crack there’s no stopping the emotional flood.

I call those “episodes,” a terrifying outburst of uncontrolled crying and screaming into my pillow. I scratch my arms and legs, berate myself for “losing it.” The more I suppress the episodes, the bigger the eventual explosion. Part of me knows I’m in no danger of hurting myself, but the mere fact that my brain shatters like that is scary. I can only hold my “episodes” back if someone may witness the event. I’m scared to be alone. Scared of what my head may throw at me while I’m vulnerable.

So I struggle. And I hurt. Somehow, I have a job. Full time work is exhausting. I have one day off a week (supposedly for “study”) to cope. My lunch breaks I spend in a dark room, eyes closed. This is how I manage. I compare myself to other, more active, people and see myself as a failure. But I can work, I do work. I’m proud to work and I love my job. That’s where my fear of diagnosis comes from: I feel like the autistic / high functioning stereotypes don’t allow for people like me. A high-functioning person is often viewed as not needing help, and the perception of autism in general can be of limitations. But it’s the labels that create limits that shouldn’t exist.

Still, the label is a resolution. The beginning of a new chapter in my life where I am no longer a mystery, no longer a failing neurotypical but a person with a set of specific challenges that are different than those around me. Diagnosis means developing strategies outside of those I created out of necessity. It means assistance in understanding the world around me. It means forgiving myself for needing to sit at my desk with sunglasses, and accepting the “episodes” as a natural and needed release.

I’m scared to say I am one of you, in case I am not. I’m scared of finding out there is nothing about me that validates my struggle with the world. I’m scared I could be a pretender, invalidating every truth that the autism community is trying to express. If that happens to be the case, I am so terribly sorry.

For better or worse, I will have this assessment. I will find out where I fall.

To those of you who are also considering, or worrying about diagnosis: you are not alone. The bravest thing you can do in your life is to begin understanding the complexities of yourself. It’s also the only way to completely understand how you best function in the world, to optimize your strengths and develop your weaknesses.

Both possible outcomes of the assessment are scary for me. They’re also both exciting in their own way.

It’s OK to be scared. You can come be scared with me.

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Autistic People Should Not Have to Pretend Not to Be Autistic

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There is something known among adults in online autism communities: society expects autistic people to blend in. We live in a world where being different is not always welcomed.

People don’t understand autism and naturally fear what they do not understand. I cannot blame or hold a grudge against these people. They are acting on instinct by excluding what is not the same.

Many introverts can relate to this struggle, as society tends to dote on extroverted and social people.

If you read definitions of “introvert,” you will find the qualities described in a negative and often pathological way most of the time. “Reclusive, self-centered, loner.”

The definitions of the word “extrovert” are almost always more positive. “Social butterfly, energetic, group-minded.”

What is an introverted, socially awkward Aspie to do?

Passing – an autistic person who is trying to blend in and pass off as neurotypical.

Many autistic adults, especially those who are not diagnosed until later in life, have grown up with a sense of shame for their “autistic-ness.” Early on we learn that kids will be mean and tease us if we flap our hands or act too strange.

Fear of bullies is often the first thing that causes us to turn inward. Autistic children are often bullied; mental and physical abuse from our peers is common, and due to our language and communication difficulties we often do not tell adults.

We may not really understand what is being done to us and feel as if our peers are unpredictable, irrational, and dangerous.

We learn to blend in – blend in or be beat down. Our vicious peers teach us that our quirks will not be tolerated. Teachers tell us, “quiet hands, sit still, you cannot wear sunglasses, or hats in the classroom.”

As children many of us are sick or uncomfortable but learn to struggle in silence. It is hard for us to explain the unpleasant sensations in our bodies. My eyes burned from light so I told my mother I had a headache. I took a lot of baby aspirin for no reason when I was little.

Once I remember telling a school nurse I felt like I would throw up in the next hour if I didn’t go home. She told me it was impossible for me to know that. She made me go back to class where I later threw up. She did not understand I was trying to tell her I was getting close to the point of sensory overload, and when I get to that overload I start throwing up. I was undiagnosed. To her I was a child trying to get out of class. This happened to me several times a week, and the school nurse insisted to my mother that I was somehow making myself sick to miss school.

People told me and my family I was lying or making things up. Nobody understood, believed, or wanted to help me. I was dismissed.

Speaking up was not helpful, and sometimes when I did people looked at me like I was making it up, so eventually I stopped.

With no other options I began to pretend to be normal, but blending in has it’s dangers. If people spend enough time with me, they figure out that I am “unique.” In professional settings it takes all of my concentration to hold my “autistic-ness” in.

The offensive “compliment” – “You hide your autism well”  — has been given to me in the past, and ever since I have been greatly disturbed.

Why should I have to hide my autism? Is it something I should be ashamed of? I love who I am and would never want to change that even if I could. Hiding… as if there is something wrong with the way I was born.

Passing is not good for your mental health. It teaches us to have shame in who we are. It gives a message that we are not good enough.

Passing takes up so much of an autistic person’s limited social energy that we go home and have sensory meltdowns the minute we can be alone. When I was a child – and even now with work – I could hold things together through the school day but would come home and fall apart.

If an autistic person is focusing on passing, they are tense, working brain muscles that are not very strong, and are not relaxed. Imagine if you were tense and wound up for 8 to 10 hours straight. How would you feel when you got home?

Eventually this can lead to a total implosion, breakdown, or possibly – when we are having extreme difficulties keeping up with everyone’s expectations of us – a diagnosis.

I have to write everything down because my working memory is not great – but my longterm memory is forever.

I need to be alone. I need to stim. I need to wear hats and sunglasses indoors. I need to avoid bright lights like Gizmo from Gremlins (and sometimes may exclaim “Bright lights!” in a Gizmo voice the instant a bright light stings my eyes and brain).

Even my humor is not understood or appreciated by most people. Not wanting to be thought of as a “childish,” I often keep my fun comments to myself so people never get to know the real fun and silly me.

The modern social world is not built for us – but we are expected to fit into it like a puzzle piece.

I am not a puzzle. I am a human, an Aspie. I’m not like you and shouldn’t have to be.

Trying to fake it is detrimental to my health, and I can’t do it anymore.

#anonymouslyautistic #shecantbeautistic #actuallyautistic

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6-Year-Old Writes Letter Explaining Why We Need to Educate Others About Autism

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A letter written by 6-year-old Lex Camilleri has gone viral thanks to its powerful message about the importance of educating people about autism and other conditions.

“On Monday I felt very sad because a girl in my class said my brother was weird,” Camilleri wrote in her letter. “My brother has autism and is not weird. I would like it if we could learn about all disabilities in schools so that everybody understands that some people are different, but we should all be treated the same.”

Camilleri’s mother posted the letter on Facebook, where it received more than 23,000 likes and 26,000 shares. “This left Lex really upset, but from this she said she wanted to make a change, she wanted to talk about ‘Disability Awareness In Schools’ in her next School Council Meeting, so she wrote a letter (with a little help from me with the spellings) which she handed in last Thursday,” she wrote. “I’m so very proud that Lex has this view and wants to change the way other children view others with disabilities. She is only 6 years old and is already part of the school council, wanting to make this change.”

The post was shared by U.K. organization National Autistic Society, which applauded Camilleri for her wisdom. “We think there should be much more autism understanding in the classroom which is why are encouraging all schools and nurseries around the country to sign up to our free autism resources,” they shared.

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What Every Teacher Needs to Hear on Valentine's Day

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I didn’t get diagnosed with autism until I was 50. I went all through my school years simply as “the weird kid” who never fit in, and no other children wanted anything to do with me.

Valentine’s Day was about three weeks away. My mom was very artistic, and my fifth grade teacher asked her to decorate a big box for the class to put their Valentine cards in it. On February 14, the box would be opened, and all the cards distributed to all the students. My mom got a huge box and covered it with red wrapping paper.  Then she cut out pink and white hearts and carefully placed them all over the box. The final touches were the beautiful delicate lace she’d trimmed and the cut-out slot on top when the cards would be inserted. She brought it to my teacher, who placed the beautiful box right on the corner of the desk. I was extremely proud my mom created it, and all my classmates were very excited to see it.

As the days went on and Valentine’s Day grew closer, the realization began to set in: I knew there would be no cards placed into that box for me. It made me feel sickened inside. A loneliness, a sadness of knowing none of my classmates would give me a card. Making matters worse, my mom had given me a package of Valentine’s cards to write out for my classmates. There were 30 cards in the package, more than enough for my class of 26.

I came up with a scheme to write out all the cards to myself, using different handwriting on each card to make it appear each one was from a different student.  Once I had all the cards written out, I put them in a bag and brought them to my classroom. I arrived extra early before anyone else was there. Cautiously looking around to be sure no one was looking, I took the cards out of the bag and quickly slid them into the opening on top of the box. I was very relieved to get them in there.

Finally, Valentine’s Day arrived. The teacher brought in pretty cupcakes for us all, pink icing with little red hearts sprinkled all over them to be exact! She then asked for two volunteers to help distribute the cards. She opened the box, and the two students began bringing around the cards to everyone. As I sat there and watched, the feeling of rejection grew larger and larger. Oh yes, the cards were piling up on my desk, but they were only the ones I had written out to myself. Once the last card was handed out, there was not one from anyone else. On one hand, I was relieved to have the big pile of cards on my desk so no one would see an empty desk, yet I knew inside what the reality was. I knew I was different and did not fit in, but I couldn’t understand why, nor could I understand why none of my classmates would accept me.

I took all of my cards home to show my mom. She didn’t let on to me that she had figured out what I’d done. It wasn’t until years later when she told me how she’d cried herself to sleep.

My message to all teachers is to have each student write out a card for all students in the class, and check to be sure. No child should ever have to go through that feeling of ultimate rejection. It lasts a lifetime. Whether it’s Valentine’s Day or any other class activity, be sure each student will be involved and feel accepted.

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People in the Autism Community Say Asda's 'I'm Having a Meltdown' Sweater Is Offensive

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People in the autism community are not happy with a new winter-themed sweater from U.K.-based retailer Asda. Many say the children’s sweater, which reads “I’m having A MELTDOWN” trivializes the meltdowns children on the autism spectrum face.

Photo of sweater that says "I'm having a meltdown" and features a snowman

On Monday, a Change.org petition was started asking Asda to remove the sweater from its store and website. “Anyone… with [autism spectrum disorder] and similar spectrum disorders or mental health conditions that involve having melt downs as a symptom deserve understanding and acceptance,” Jennifer Dunston, who started the petition, wrote on Change.org. “They/we do NOT deserve to be made fun of.”

So far the petition has been signed by over 60 people, many of whom echo Dunston’s sentiments. “This is not funny at all. I know how difficult meltdowns can be to deal with. Very disappointed with Asda over this,” one petition signer commented.

“Bad enough having people out there who makes it difficult for people with autism let alone a shopping brand,” another wrote.

Not everyone finds the sweater offensive. “I have a child with autism, [sensory processing disorder], anxiety and panic disorder,” Stacey Rushing, a contributor to The Mighty, said. “That said, nothing about this sweater is offensive. It’s a snowman melting, a play of words. The word ‘meltdown’ is no specific to one’s disability. It can be used in any context by any person.”

“I have autism, I had many meltdowns as a child, however have less now,” Lottie Harland, a contributor, said. “I don’t find this offensive as many people have meltdowns, it’s a turn of phrase for I feel like things are out of control and this happens to us all. It’s a funny shirt making light of the feeling of being out of control. And honestly I think it’d get more people talking so they’re less afraid to say I’m having a meltdown I’m not in control, and isn’t that good?”

This isn’t the first time people have petitioned an item sold by Asda. In 2013, a “mental patient fancy dress costume” was removed from the store after people protested the Halloween costume as being offensive.

Despite controversies surrounding its clothing, the company has made strides in making its stores more disability-friendly. The retailer was praised earlier this year for creating disabled bathroom signs that point out “not every disability is visible.” The store also made headlines in April for offering a “quiet hour” so customers on the spectrum could shop without extra sensory stimuli.

Update: A spokesperson for Asda told The Mighty, “We take mental health issues extremely seriously and supported World Mental Health Awareness Day this month. Our snowman t-shirt is intended to be light-hearted and we’ve received great feedback from customers. We’re sorry if anyone is offended by it – that is never our intention.”

Do you think this shirt is insensitive? Let us know in the comments below. 

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