To Those Who Give My Parents and Sister With Autism 'That Look'

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I know you are out there. And don’t fear: you’re not alone. I see the looks you give my parents as they let one of my sister’s “rude” comments slide. I see the way you purse your lips when my slightly overweight sister orders the cheese fries instead of the salad with dressing on the side. I can sense the internal swell of pride you feel as you pity us for our ignorance because, surely, if you were her parent, Kate* would wipe that scowl off her face. If you were her parent, surely those inappropriate comments would have stopped long ago. If you were her parent, surely today Kate would be a beacon of health and kale-fed wellness. 

It’s hard for me to find the courage to tell you these things, since you’ve been such a constant presence in my life. You were there on our family trips to the zoo, as my parents were forced to use a leash and harness for my sister’s safety. You were there on our trips to the toy store many years ago, silently cocking your eyebrows as my sister screamed and pounded the floor while my mother helplessly watched from the sidelines. 

But there were also times you weren’t there. 

You weren’t there when my mother, a retired special-education teacher, learned my sister has autism.

You weren’t there before Kate discovered French fries, when the doctors almost had to put a feeding tube in because she would throw up everything we tried to feed her. 

You weren’t there when, for the first five years of her life, my parents faithfully brought Kate to American Sign Language classes because they were told she would never learn to speak; and you weren’t there when she defied the odds. 

You weren’t there on the cramped middle school bus, when every single person put their hand on the empty seat next to them and told my sister that no, she couldn’t sit with them. You weren’t there when my sister realized she didn’t have friends.

I realize there is nothing I can do to make you leave. You probably don’t even realize who you are. But recently, it’s hit me that one day I will be the likely subject of your critical stares. I’ve always known one day, caring for my sister would be part of my job description. I will most likely be her caretaker. And honestly, I worry that I won’t do it well. Selfishly, I often worry about my future and how I will juggle a career, children and my sister’s needs.

But then I remember that, without Kate, I wouldn’t be the person I am today. She taught me to be patient, tolerant and understanding. For every minute of stress we’ve faced, there have been 10 of laughter and joy. 

So, wherever you are, I ask that you sit back for a moment and ask yourself if, really, you would “handle things differently.” Yes, Kate, like all of us, has her flaws, but, for all those moments you weren’t there, she was. The remarkable thing about human nature is that, despite overwhelming belief to the contrary, we have the power take what the universe dishes out, and we become stronger for it. 

Sincerely,

Caroline

*Name changed for privacy

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 Submit a Story page for more about our submission guidelines.

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Beth Hiatt Writes 'Let's Talk About Autism' Article for School Magazine

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Beth Hiatt, 13, is the co-editor of her school’s magazine, and she recently wrote an article called “Let’s Talk About Autism” for the publication explaining how autism affects her daily life — and how she hopes to change the public’s perception of people on the spectrum.

After the piece was published, her mother, Beccy Hiatt, shared the unedited article with the popular Facebook community page and website, Autistic Not Weird, where it was reposted on Monday.

“If a friend/relative has autism, I really hope this article makes others understand things from their perspective,” Beth, from Cornwall, England, told the The Mighty.

In the article, Beth explains what sensory overload is like for her, and how she often feels misunderstood by others. Take a look:

Let’s Talk About Autism

I have autism. And I’m not ashamed to admit that.

It may come as a bit of a surprise to you, as the only autism you may know of being exposed to have is the low-functioning, severe, non-verbal kind.
I do not have low-functioning autism. I am a high-functioning autistic. There’s a whole spectrum of autism, (that’s why its full name is autism spectrum disorder) and no two people with autism are the same. Those with high-functioning autism/mild autism/Asperger’s syndrome do indeed face extremely different issues to those with low functioning autism, but there are similar issues affecting the majority of the spectrum that most people do not know.

Imagine having all five senses multiplied by one hundred. Many people with autism, myself included, have never experienced complete silence. We always hear the humming of the lights, or a bird outside, or even the sound of our own breath. We always hear this loud and clear, even in noise-filled crowded room. We feel labels in our clothes for the entirety of the day if they are not cut out, some smells and tastes make us literally unable to breathe. After this all gets too much (trust me, this usually doesn’t take too long for most) we can experience something called sensory overload. If visible to others, it probably looks like a tantrum (If you were wondering, I haven’t experienced full-blown sensory overload in years, but it still stands. You just learn how to repress it). However, we are not waiting to see if others respond. We want to get out of there as quick as possible, and we certainly don’t need judgement from others. I know our behaviours may seem self-injurious to those around us and it may seem funny to see a child who is not two kicking off and screaming, but who are you to judge? You have absolutely no idea what it is like.

Imagine being seen as rude when you do not get the gist of social norms. Most people are born with a general understanding but just need to be reminded to mind their P’s and Q’s from time to time. Usually, they are well-mannered by the age of four or so. Well… we are all still learning, whether we are eight or eighty. We do try our hardest to think before we speak, but we slip up quite a lot. Sure, it’s funny and cute when a three year old says something they shouldn’t, but when a nine year old accidently starts an argument between their family after they repeat something their parents muttered under their breath (Guess who did that, kids!), you’re seen as rude and inconsiderate…

Imagine struggling to catch a ball, hold a pen or do anything that involves fine or gross motor skills. We are the children that run with a gait, who are always picked last for the team, whose handwriting ranges from scruffy to illegible. The worst thing is, we are not often given help for this. As autism is known as an invisible disability, people think we are not trying hard enough, children laugh at our mishaps, we feel left out and like a failure on many occasions.

Although after reading this article autism may seem like a terrible thing to have that will ruin your entire life, don’t be fooled! All of the best scientists (Einstein, Edison, etc.) that changed our world and way of thinking drastically were rumored to have autism, along with such famous faces as Daryl Hannah, Tim Burton and the legendary Temple Grandin. We can go on to do the most amazing things if our self-esteem isn’t shattered.

Autism has no known cause and no known cure, but there is somebody who can make life easier for those who are diagnosed.

It’s you.

Autism Awareness Day is coming up on April 2nd, and you will probably be told to wear blue to make people more aware, but I want you to do more than that. Make every day autism awareness day. Try to make a safe space if somebody with autism is on edge at a party. Gently nudge them if they say something wrong. Pick them for your team if playing sports. Even smiling and saying hello in the corridor. Small gestures matter. Often, they can speak louder than words ever could. Please, be autism aware.

Thank you.

“I did not expect the extensive amount of likes and shares my piece would get, along with comments such as ‘enlightening,’ ‘insightful,’ ‘I have learnt so much from this’ and ‘this needs to be posted in all school magazines,’” Beth told The Mighty. “Of course I didn’t think this was going to happen!”

Chris Bonnello, founder of Autistic Not Weird (and a Mighty contributor), said about a month ago he began collecting “Awesome Stories” to counterbalance the negativity that’s so often associated with autism. Once a day, he features a post from a follower who is proud of something they or an autistic relative has done.

“When I read Beth’s piece I was amazed at how eloquently and confidently she wrote – much more so than me at 13,” he told The Mighty, “and I knew beyond doubt it would have a positive impact on autism awareness.”

Today’s “Awesome Story”- here’s something I love. ???? Beth, aged 13, wrote this article about autism for her school… Posted by Autistic Not Weird on Monday, March 28, 2016
  Lead image via ThinkStock

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How Our Son Responded When We Told Him About His Autism Diagnosis

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Our son is fully aware of his autism diagnosis and has been for years. As we’ve learned and he’s learned, we’ve made a habit of sharing our knowledge together as much as possible (and as appropriate).

After we received his diagnosis, we considered how to tell him, and while we were still digesting the news, one of my colleagues arranged a lunch date with me, herself and her adult son on the spectrum.

When talking about how to tell our son about the diagnosis, his advice was: Don’t wait.

We found ourselves stumbling into the conversation only six weeks after we received the diagnosis.

My husband and I were not yet ready to have the discussion, but it became clear that our son needed to know after he announced he “was stupid” because he “kept getting sent out of the classroom” because he “couldn’t do the work.”

I hated his coming to that heartbreaking conclusion. The conversation had to take place right away because our child was in pain and we needed to do something about it.

I think we did pretty well at not using too many technical terms, and we emphasized all the good things that came with the way his brain is put together.

We were specific, as much as we could be in the early stages of our understanding, about the gifts and challenges he experienced.

We also talked about how we would work as a team on his challenges, giving him tools and strategies to eventually manage them on his own.We talked about his strengths, about people on television or famous people who also have autism and the successes they have experienced. He liked the idea that Einstein may have had autism.

Most importantly, he seemed relieved to know his struggles at school weren’t because he lacked something and instead stemmed from coming at things from a different direction.

It has been four years almost to the day since that talk, and when I prepared to write this article I asked him what he remembered of the conversation.

“Nothing,” he answered. “It is like I have always known that I had autism.” I like to think that means we did our job well.

And for us the conversation doesn’t really end. Like all important parent-child conversations, it isn’t a sit-down-one-weekend-and-you’re-done kind of thing.

As he grows and his developmental understanding becomes more sophisticated, with every challenge and every success, we try to weave it all into a cohesive tapestry that makes sense to him.

Our goal is 360-degree knowledge of himself that is based in self-love and constantly-reinforced total acceptance.

Follow this journey on Autism Mom.

The Mighty is asking the following: How would you describe your disability, disease or mental illness to a child? If you’ve done this before, tell us about that moment and the child’s reaction. 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 Submit a Story page for more about our submission guidelines.

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7 Things Parents of Kids With Autism Want Teachers to Know

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When I’m on Facebook talking to people, one of the topics that keeps coming up is teachers and how many don’t understand children with autism. I don’t want to paint a negative picture of teachers, because most of the time they’re great, but every now and then, misunderstandings happen and mistakes are made.

So I asked this question in a Facebook post:

What, in your opinion, are the most important things a teacher should know about autism?

Here are the seven most-liked comments.

1. “Understand that ‘high functioning’ kids can hide their ‘symptoms,’ but need just as much support.” — Hattie Hodkin

People used to say to me that they would forget I was autistic because of how well I hid my traits, but they were reminded on my bad days. The signs that a day or situation is challenging for a child can be subtle. We need to look for these subtleties and teach teachers what to look for, too.

Sometimes we miss women on the spectrum, as they may be pressured by society’s expectations to hide their many traits. When they appear very anxious, people often mistake it as mental illness instead of recognizing it as a part of autism.

2. “I think they need to know that some children with ‘high functioning’ autism struggle with coming to them and saying ‘I need help.'” — Sarah Forrester

I had a parent tell me their child was coming home stressing about school work. They didn’t know what to do or didn’t understand the wording of the tasks. When faced with tasks they don’t understand, autistic people can get confused and anxious. Then our imaginations are impaired by stress, and the concept, in that moment, to solve the problem doesn’t exist.

3. “Listen to the parent of the ‘high functioning’ child [when they say] they are not being naughty. Kicking arms and legs out is a sign of excitement/anxiety… Teachers need to be educated, but the key thing is to listen to the parent or carer of the child, as we know them best.” — Adama-cherry Devill

I believe that all schools should have fidget toys. The child with autism can still listen to you while holding the fidget toys. If I was a teacher, I would much rather have a child holding a Tangle than swinging their arms and legs around.

4. “Get some facts. Learn about autism, get more training and don’t tell my son to look up at you.” — Helen Todd

I’d quite like everyone to do this — not just teachers but all the other professionals who work with people who have autism.

5. “I would love my son’s teacher to understand the absolute necessity to keep to a timetable/schedule. He depends on it. To appreciate how clever he is, and to give him more advanced work when he needs it. To address him directly, and understand if the teacher speaks to the class generally, my son may not understand she means him as well!” — Kerry Burton

Explain everything in layman’s terms: simple, direct and jargon-free. Autistic people often take things very literally. Avoid metaphors, similes and idioms.

6. “More understanding, giving your child time to process what has been said rather than pushing for an immediate answer. [My son] always needs a good few seconds to process conversations. Teachers need more patience.” — Kate Taylor

Autistic brains often struggle to do multiple tasks at the same time. When we are asked a question we have to:

  • Take in the words, know what they are.
  • Generate the meaning of the question
  • Then find the answer.

That’s a lot to do in a short amount of time, so let’s be patient and give them a moment to answer.

7. “Don’t ask a child to look at [you], [A lack of eye contact does not mean they aren’t listening]. Really winds me up, that.” — Joanne Charlton

Eye contact is very uncomfortable for me. If a teacher says,”Look at me!” I just look at his forehead. But if you’re a teacher say, “Look this way” — It’s a lot nicer. A child with autism who isn’t looking is probably still listening.

Those are my most popular responses. Teachers, please take note!

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. 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 Submit a Story page for more about our submission guidelines.

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An Easter Mishap Helped Me Embrace My Daughter With Autism for Who She Is

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piper playing with an easter egg Yesterday was Easter morning. Excitement was in the air as the children woke up to find the Easter Bunny had stopped by while they slept. True to tradition, empty baskets were set outside of each child’s bedroom door. Next to each was a single, candy-filled egg, strategically placed to let them know an egg-hunt awaited them downstairs.

I awakened to choruses of “The bunny came!” and “Look! We got baskets and eggs!” from my older two. Piper, however, was less than thrilled. She sat at the top of the stairs and cried. “No! No! I want my purple basket!” The bunny had slipped up and left a pink one in its place. 

My drowsiness lifted, and I immediately shifted into crisis-aversion mode. How could I have forgotten that last year she held onto a purple, plastic bucket as she collected Easter eggs? My husband and I led them downstairs, and though I swiftly replaced her pink basket with the purple bucket, the damage was already done. She threw the bucket and sat on the floor with all the makings of an impending meltdown.

There we were in the kitchen, eggs everywhere, just waiting to be scooped up. But I could feel the fun-filled event I had pictured in my head the night before quickly turning into tension for everyone.

“Why do your always have to make so many rules because of her?” one of my older two protested because I asked them to wait until she calmed down.

At that moment, my gaze met my husband Dave’s, and we turned them loose to hunt their eggs. With no words necessary, we had both realized that collectively standing there waiting for her, bracing ourselves for the meltdown was not going to accomplish anything.

The funny thing is, once we stopped bracing ourselves for the “inevitable” and relinquished control of the situation as a whole, Piper stood up and walked over to some eggs that had been left in her Minnie Mouse slippers. The meltdown never happened. Sure, she became preoccupied with those two eggs and stopped “hunting,” but she was happy. All of the kids were happy. It might not have played out exactly how I imagined it would, but it was good enough and we embraced it.

Though that experience was but a drop in the bucket of parenting a small child with autism, a valuable lesson was hidden in those few moments. I learned that finding our way through each day is a lot more positive when we stop bracing ourselves for the fallout and start embracing Piper for who she is and how she views the world and on a smaller scale, each experience.

Hyperfocus is often a point of frustration in parenting a child with autism, because a child becomes so involved in an activity may find it extremely difficult to transition to another activity. Yesterday, instead of seeing that trait as a negative, I embraced the heck out of it. Given three crayons and a $1 coloring book, Piper was the quietest, most well-behaved child in church.

I know everyone in the family was holding their breath when Piper followed her sister to the front of the church for the Children’s Moment. She’d never done that before. No one knew if she’d wander or get overwhelmed. But she sat there with her sister, in front of the entire congregation, and when it was done, returned to her seat just like everyone else. Embracing her progress and growth enabled us to witness her shine in a totally unfamiliar social situation. To everyone watching, she was just like all of the other kids. To me, that was the most amazing thing I felt all day.

Embracing her happy nature and love of music allowed us to enjoy her dancing innocently in the aisle as we slowly filed out of the service.

Embracing her patience allowed us to enjoy brunch at a fancy restaurant. Even though the service was slow, at best, not once did she leave her seat.

The routine that is so necessary to maintain also paid off big-time, as she went down for a nap shortly after 2 p.m., because that’s what she does every single day in Pre-K. It afforded me an uninterrupted hour of play time with Cam, a connection which he needed from Mommy.

There are so many moments in our journey when I get frustrated and lament, “This is not how it’s supposed to be.” Reflecting on yesterday has opened my eyes, literally, as Piper’s mom. What she needs from me when she begins to struggle is not for me to brace for the next blow. She needs me to get on her level and try my hardest to see the world as she sees it at that moment. In doing so, I am embracing her being.

Sure, yesterday started with a struggle. But it ended with a smile, many laughs and a promise for more joy, today.

Follow this journey on drivingthestrugglebus.

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 Submit a Story page for more about our submission guidelines.

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Supercuts Employee's Simple Act Helps Boy With Autism Feel Comfortable Getting a Cut

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Kathleen Tarzwell tweeted a photo of her 7-year-old son Braeden, who has autism, at Supercuts in Media, Pennsylvania, after he received a haircut on Saturday. Tarzwell credited their hairdresser, a woman named Christine, for her patience — and for pretending to give Braeden’s stuffed platypus, Perry, a buzzcut.

Because of sensory overload and the anxiety surrounding the experience, haircuts can be difficult for people on the autism spectrum. So watching Perry “get a cut” helped comfort Braeden.

“13 minute haircut today thanks to Christine and Perry being brave enough to get his haircut too,” Tarzwell wrote on Twitter.

“Before going to Supercuts… Sometimes I would even allow [Braeden’s] hair to grow for six months to avoid putting him through what looked like torture to him,” Tarzwell explained to The Mighty in an email. “Christine always likes to physically show him the clippers won’t hurt. Perry the platypus is everything to Braeden.”

Tarzwell has been vocal about showing her thanks to those who have made a difference in her son’s life — her overall mission is to promote inclusion for people with autism. Last month Tarzwell wrote an article on The Mighty about a local waitress whose kind act (again including Perry) moved her to tears.

“When Braeden saw Christine cape Perry like she does with him, and ‘cut’ his fur, it was like reliving the day at Bittersweet Kitchen when the waitress brought Perry a plate of food,” Tarzwell told The Mighty. “We need more Christine the Hairdresser and Heidi the Waitress in the world, because all anyone wants, autism or not, is to feel accepted.”

Tarzwell sent the photo and story to Love What Matters yesterday, which was then shared on their Facebook page. She again expressed her gratitude, and revealed that the family previously had some very negative experiences with hairdressers:

My son has autism, haircuts have been somewhat challenging for him. We spent 4 years bouncing from salon to salon, a new one almost every haircut – and we’ve even been asked to leave mid haircut at a barbershop. We’ve been going to Supercuts in Media for almost a year now, and I want them to know how truly grateful I am for their patience, understanding, and more than anything acceptance. Christine has become our regular hairdresser and today she gave Perry a haircut too, and that means the world to Braeden.

“My son has autism, haircuts have been somewhat challenging for him. We spent 4 years bouncing from salon to salon, a…

Posted by Love What Matters on Sunday, March 27, 2016

 

And this isn’t the first time a Supercuts staffer has stepped it up in the salon with a client. In January hairstylist Julia Werder received praise from Laura Connerton for getting on the floor to cut the hair of Connerton’s 11-year-old daughter, who has a rare genetic disorder and autism.

h/t WPOC/Michael J

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