4 Things I Hope My Autism Inspires You to Do

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April is Autism Awareness Month, but just two years ago all April 1 meant to me was April Fools’ day. The last two years of my life have been a journey toward both self-discovery and self-advocacy as I have slowly stepped out of the shadows. I am continually gaining the comfort and confidence to add my voice to the valuable discussion about autism in our communities.

Venturing out has afforded me the opportunity to share my personal story of being diagnosed with autism spectrum disorder as an adult. I was 36 when I was diagnosed. I had a family and a career, and although I continue to have my share of silent struggles, I have for the most part been able to experience some success in navigating the world of autism as an adult. As a result, one of the most common comments I receive from others is fairly common among people with disabilities. “You’re such an inspiration.”

Since officially becoming a part of the autism community, I have become more aware of the potential problem with statements such as these. It is sometimes difficult to feel inspirational for others when you’re simply living your life. Going public with my autism diagnosis shouldn’t necessarily make me a hero; after all, I’m the same guy you knew before December 2014 when I received my diagnosis.

On the other hand, I am a pastor and with that profession comes the responsibility and drive to inspire people to something greater. I often tell my congregation that a good way to be better is to not only focus on what we want to overcome, but on who we want to become. So while I have to wrestle with my new “normal” that my Aprils will be filled with well-meaning supporters who will message me about how inspired they are by my courage and transparency, I also know that my role in many ways is to inspire our society to become better. With that being said, I want to share four ways that I would like my life and my story to inspire you to not just applaud what I have seemed to overcome, but also discover who and what you can become.

1. Become more Aware

Since being diagnosed with autism spectrum disorder, I’ve learned a lot about myself, but even more importantly, I have learned a lot about why I knew nothing about myself for so many years. Since being diagnosed, I have been confronted with stereotypes about autism, stereotypes that I believe are the reason why so many other adults, minorities, and young girls go undiagnosed.

Autism has received a lot of attention in the last decade, but there are still millions of people who don’t know nearly enough about autism and how it affects people. I should know; I was one of those people. Until I was diagnosed, most people I had a personal relationship with knew very little about autism.

Autism awareness is important, but I would like to inspire you to an awareness that doesn’t simply acknowledge the existence of autism, but instead seeks knowledge about autism. Autism is a spectrum; so many people are affected in different ways. Educate yourself about autism by asking questions from people who are really living with autism. Autism awareness should be about expanding people’s exposure to the life of autistic people. That can’t be done with statistics; it can only be done with stories.

Ask questions. Assume nothing. Aspire to become more aware.

2. Become more Accepting

My line of work makes me somewhat of a public figure. One of the primary reasons I disclosed my diagnosis to my entire church and community was my belief that my platform as a pastor should be used to help the community learn how to embrace all types of diversity. Neurodiversity is the concept that neurological differences should be recognized and respected as any other human variation. Simply put, the autistic mind works differently than a “neurotypical” mind, but the differences should not be used as an opportunity to assume any level of deficiency. If my life is to be an inspiration to you, let it inspire you to be more accepting of those who think, process, and live differently than you. Accepting autistic people includes accepting all of what makes them who they are. In a world that struggles with intolerance and indifference, my hope is that you will realize that to make a difference, you have to be willing to be different. Autistic minds are very different, but when given the right opportunity we can make a huge difference in the world — for the better.

3. Become an Advocate

I was once told to never allow my life to be defined by either the applause of my fans or the attacks of my critics. It’s one of the most profound pieces of advice I’ve ever received. As a pastor, I acknowledge those who applaud me, and I take careful consideration to those who attack me, but I am motivated most by those who advocate with me. Nothing communicates my ability to inspire you more than the creation of another voice that becomes a champion for the cause for which I myself am committed. Real inspiration happens when you move from merely being an admirer to being an advocate. Advocate not because I need a voice to speak for me, but because my voice has inspired you to join with me and so many other voices speaking on behalf of the autism community.

4. Become more Active

Autism awareness is a great start. But if you really want to be inspired by my life, be active and not reactive. Being actively involved in the autism community starts by finding meaningful ways to engage in May when Autism Awareness Month is over. From May to March, be active and stay active.

Three ways to actively engage in the issues facing the autism community are policies, programs, and platforms.

Find out which state, local, national, and insurance policy issues most affect the autism community and make your voice count as an advocate for those on the spectrum. Join or create programs at the local and national level to assist and provide support for autism spectrum individuals and families. Finally, use your platform to educate, empower, and encourage change.  Everyone has a platform that they can use to do as much as possible to make an impact. You can’t do everything, but you can do something.

If you really want to be inspired by my story of perseverance, hope, and courage, that’s OK. But don’t just be inspired by what I have overcome, be inspired to help our society focus on what it should become. Let’s do this together. Let’s change the world.

Lamar Hardwick

The Mighty is asking the following: Tell us about a time someone in your community went above and beyond (or did the exact opposite) for you or your loved one with special needs. 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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'Life Animated' Documentary Tells Story of Man With Autism Who Used Disney to Connect

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While there has been plenty of controversy surrounding the Tribeca Film Festival this year, one film about autism is garnering praise.

Ron Suskind, the Pulitzer Prize winning journalist who wrote “Life Animated: a Story of Sidekicks, Heroes and Autism,” worked with acclaimed director Roger Ross Williams and producer Amy Goldman to make a documentary based on his book. The story follows Suskind’s son, Owen, who has autism, and has been able to connect with the world through Disney movies.

Owen Suskind, now 24, didn’t speak for years, but he memorized dozens of Disney movies and “turned them into a language to express love and loss, kinship, brotherhood,” according to the film’s website.

In a clip from the film, Ron Suskind reveals the first conversation he ever had with his son.

“I see Owen on the bed, flipping through a Disney book,” he said in the video below. “I see Iago, the puppet [the parrot from Aladdin]. I grab the puppet; I pull it up to my elbow. … And Owen turns to the puppet. … and I say to him, ‘Owen, Owen, how does it feel to be you?’”

His replied stunned Suskind: “Not good because I don’t have any friends.” Though emotional, Suskind was determined to carry on the conversation with his then 6-year-old, so he stayed in character and kept asking questions. At the end of the conversation, Owen Suskind got into character as Jafar.

 

The Suskind family, who now live in Cambridge, Massachusetts, appeared on The Meredith Vieira Show in Jan. 2015 to promote the book, and where Ron Suskind recalled his reaction. “He’s speaking a Disney dialogue!” he’d exclaimed. “That was the breakthrough.”

The parents continued to use animated films as a way to communicate with their son, and they even coined the term “affinity therapy” to describe the method, according to a 2014 article Suskind published on Autism Speaks’ blog.

Owen Suskind currently works at a local movie theater and has his own apartment, according to ABC 7 WKBW Buffalo. Michelle Garcia Winner, a speech language pathologist who worked with the young man to help prepare him for living independently, said animated films were an integral part of his therapy. “A way to get Owen to learn is really by focusing a lot of learning around the thing he’s going to pay attention to and actually seeking to learn on his own, which is Disney,” she told the local news site.

The film will be screened at the Tribeca Film Festival on April 23 and released later this year.

 

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The Moment I Felt I Chose the Right Therapy for My Son With Autism

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I never imagined we would find a second home at an applied behavior analysis clinic. From the outside it looks like any other office. But inside it’s filled with so much love and laughter.

There are no superheroes or miracle workers, but inside you will find good people with good intentions.

Some are still in college, and others have a little more experience under their belts. One with the insight and love only a sister could understand. A boss who flies to the other side of the word to help open clinics, while still helping every parent who walks through his doors.

They share in the victories, the tears. They shorten holidays with their own families to be with my child and countless others.

The clinic becomes like a second home. 

A place where a little boy learns to ride a bike with no training wheels.

Or tie his shoes “all by myself, Mommy!”

Support that my son relies on — that I rely on. They help him navigate a world that looks different through his eyes and isn’t always kind to people like him.

There’s so much hope in those few rooms. Landon turns 6 tomorrow! I can’t begin to tell you the gains he’s made! Like every kid, he wanted that special cake.

A “Henry Hugglemonster” cake was nowhere to be found, so in steps Landon’s therapist to ensure his special day is a little more special. She not only found someone to make the cake, but insisted on paying for it!

“It’s my birthday present to him and you. I can’t wait to see his reaction,” she said.

cake decorated to look like henry hugglemonster cartoon
Landon’s Henry Hugglemonster cake.

I know it’s just a cake and the world wouldn’t end without it. It warms my heart and reconfirms we’ve made the right choice for our son. As a parent of a child with autism, my days and nights can be filled with worry.

Am I doing enough? Am I doing the right thing?

Did I make the right choice by going this route?

What does the future hold? Will others see him as I do?

But tomorrow those thoughts are pushed aside and replaced with a little boy’s birthday party!

With a very special cake.

 The Mighty is asking the following: Tell us about a time someone went out of his or her way to make you and/or your child feel included or not included. 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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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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