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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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Helping My Daughter on the Autism Spectrum Sleep More at Night

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Understanding, expressing and processing emotion seem to be the biggest difficulties in my house at the moment. We are at the preteen stage of development, which can be a challenge for many children. And with the added challenges that can come with autism, emotion regulation can be more difficult.

Out of all the regulation strategies we are adopting, establishing a bedtime routine seems to have the biggest impact on my daughter’s ability to regulate emotions, as well as my ability to be a fully functioning mum. It has also in turn been one of our biggest difficulties to manage.

For my daughter, nighttime is the time that her mind comes alive with thought and worry. It is the most likely time of day for her to melt down, and it is the time of day when I am not at my best. She is 11 now, and this has been a forever challenge. From a baby she would cling to me and not let me go. As a toddler I would put her to sleep in a buggy so she didn’t wake her sister. I eventually established something that resembled a bedtime at around 5 years old, only for it to be disrupted again at 7 by the increase of anxiety from day-to-day demands.

I knew this was a cycle perpetuating her anxiety and leaving us all feeling exhausted, but I had also lost sight as to where to start to make a change. We needed some help. Fortunately, after months of being on a waiting list to receive some support, we were able to see a psychologist.

The psychologist taught us a lot about sleep and routine, from sleep triggers (this is something that happens every night that helps our brain know when bedtime is coming) to understanding why our bodies need sleep and why worry creeps in at night. We were even challenged to write a story to read every night to reinforce the learning.

People often think of bedtime as something automatic by the time you have a preteen child. But establishing a change with my daughter takes months of work and effort for everyone involved.

We now mostly have a routine established. I say mostly because my daughter sometimes pushes boundaries, and we occasionally go a couple of steps backwards before we move forward again, but I have learned this is OK.

Tackling sleep has been a momentous task for us all, but I’m happy to say it has been worth it! It’s amazing how much sleep impacts our ability to cope and regulate. I am happy to say that with the new routine in place, we are all managing our emotions a little easier and enjoying our day with a little more energy.

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A Letter to Teachers of Students on the Autism Spectrum, From a Mom

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When my son was in school 21 years ago, we didn’t know he was on the autism spectrum. What we did know was that he had some learning disabilities that made it difficult for him to function in a traditional classroom without extra support.

My son loved to learn! But at one school, he struggled with teachers who practiced “old school” teaching methods, teachers who wouldn’t acknowledge that he had a different way of learning. I’ll never forget the time he came home after school so sad and upset. When I asked him what happened, he told me that his lab partner in science class complained he wasn’t doing his fair share of the work. The lab partner he was assigned was the same boy who taunted and teased him on the playground. Instead of teaching his lab partner about patience and compassion for my son’s challenges, the teacher told my son he had to work alone. When I went to speak with this teacher, the teacher was unwilling to budge — but the next day, my son was given two new lab partners (two boys who were always kind and friendly to him).

We took my son out of that school and found a school with teachers who embraced his learning style and accepted him for who he was. No, that’s not quite right. They adored and admired him for who he was. They didn’t punish him for the way his brain worked. They nurtured and believed in him. They proved to him that he was smart and talented. And guess what? He became student of the year and went on to graduate from college with honors.

He may not remember his experience at the other school, but I’ll never forget. I use the memory as motivation to do whatever I can to make sure no other child with autism is labeled or misunderstood.

Dear teachers of students on the autism spectrum:

It’s been years since my son was in elementary school, and I hope that there is more awareness out there. I think it varies from school to school, so here are some words of advice I hope you’ll consider:

Delve deeper. If a student doesn’t fit a “typical” profile, don’t automatically assume they are “lazy” and don’t want to do the work. I wish my son’s teacher had called me to discuss the issue before acting.

Create partnerships, not adversaries. The teachers at my son’s second school were nurturing and made me a part of their team. Instead of feeling at odds, we worked in tandem creating a supportive environment for my son. He thrived.

Give a child with learning challenges other ways to do their work and take tests. It isn’t “unfair” or cheating. It’ll give that student a chance to show you that they have indeed learned what you’ve taught them.

Don’t wait until parent conferences. Set up regular check-ins and communication with your autistic student’s parents. If I had known that the science teacher was going to be assigning lab partners, I could have let the teacher know this would be a challenge for my son.

Your actions have impact. Be the teacher who makes the positive impact your student (and his family) will remember with gratitude forever. Your words and your actions matter.

Note for parents and teachers: On my Geek Club Books autism nonprofit blog, I asked two of our autistic writers with experience in early education to write “What Your Autistic Students Want You to Know.” Read what they have to say and get the free guide with more of their advice and tips. Geek Club Books for Autism is part of The Mighty Partner Program.

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