What I Want More Than Awareness for My Autistic Sons

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Do you know that World Autism Awareness Day is on April 2? On that day, you’ll be asked to “Light It Up Blue” or “Color the World” to help raise awareness for autism.

How important is World Autism Awareness Day to me?

Meghan Hanley’s sons.
Meghan’s sons.

I booked my boys’ birthday party on that day. I looked at my calendar and there wasn’t a rainbow of appointments staring back at me on that day so it meant it was open. Then my girlfriend texted, “Oh, you’re so awesome having their party on that day. I bet you’re going to do something big.”

I sat there for a second and had to really think about what is so special about that day. I actually had to ask! See, the thing is I didn’t book my boys’ birthday party on April 2 because I knew it was World Autism Awareness Day.

We raise awareness every day no matter where we go — sometimes loudly! I talk about autism, write about autism, research autism. Hell, my van is covered in stickers to raise awareness and keep my boys safe for first responders just in case.

What I’m really looking for is acceptance and understanding. I want people to understand my boys.

When my son, Beast, was at the hospital, a doctor called autism a behavior disorder. And she said it as she was walking out the door. I was so shocked that I didn’t have a chance to correct her or ask her why she said that.

Then I thought about it — people can be aware of autism, but they may not understand autism. I feel like every medical professional who I’ve been talking to about Beast looks at the nonverbal piece and doesn’t listen to everything I have to say about my son. Because they don’t listen to a verbal account of what’s going on with him and don’t understand all of the nonverbal language, he’s being dismissed.

It’s the flip side of that coin for my other son, Bubba. That kid can talk! He will talk your ears off. That’s how he processes, controls or regulates a situation. I’ve heard it a million times that he’s smart and quirky. Not a big deal. Social communication is where he faces challenges. He’ll agree to anything and say anything if he thinks he’s in trouble. He has a hard time with executive functioning. He needs clear step-by step-instructions. He was getting punished and made an example of in school, and his self-esteem suffered because the school didn’t understand him.

I want people to understand and accept my autistic boys. 

My boys are snowflakes that are beautiful and complex.

Autism is an explanation and not an excuse.

I want people to look closer, see, listen and observe.

I need people to learn that my kids do certain things that may seem different, but it’s how they communicate, relate to you, express an interest, get your attention or get your love.

April 2 might be World Autism Awareness Day, but every day is autism acceptance day.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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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110 Parents Describe Their Children With Autism in One Word or Phrase

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I am honored to know a lot of parents of children with autism. So I took over 100 of them recently and asked them to describe their children to me in one word or phrase. The results are very powerful:

  1. Fun
  2. Lovely
  3. Affectionate
  4. Courageous
  5. Strong
  6. Emotional
  7. Always smiling
  8. Helpful
  9. Marvelous
  10. Train lover
  11. Intelligent
  12. Awesome
  13. Horse lover
  14. Precious
  15. Great artist
  16. Sweet
  17. Energetic
  18. Gorgeous
  19. Mischievous
  20. Loves outdoors
  21. Beautiful
  22. Clever
  23. Loving
  24. Caring
  25. Cat lover
  26. Xbox addict
  27. Informative
  28. Routine lovers
  29. Toothbrush fascination
  30. Gentle
  31. Chatterbox
  32. Kind
  33. Light of my life
  34. Bus obsession
  35. Charming
  36. Giggly
  37. Anxious
  38. Quiet
  39. Dalmatian collector
  40. Harry Potter’s greatest fan
  41. Cheeky chub
  42. Dancer
  43. Mummy’s boy
  44. Fragile
  45. Joy
  46. Smart
  47. Special
  48. Animal lover
  49. Complex
  50. Cute
  51. Loud
  52. Thomas fan
  53. Little monkey
  54. Quirky
  55. Aspiring author
  56. Cheeky
  57. Amazing
  58. Best friends
  59. Funny
  60. Creative
  61. Bubbly
  62. My world
  63. Sunshine
  64. Handsome
  65. Simply the best
  66. Gifted performer
  67. Hard working
  68. Unique
  69. Jokestar
  70. Perfection
  71. One-armed woodworker
  72. Lively
  73. Determined
  74. Superhero lover
  75. History buff
  76. Incredible
  77. Talented
  78. Dinosaur loving
  79. Brave
  80. Wonderful
  81. Water baby
  82. Minion fan
  83. Teddy loving
  84. Figure obsession
  85. Blessing
  86. Brilliant sense of humor
  87. Inquisitive
  88. Excitable
  89. Calm
  90. My hero
  91. Loved to the stars and beyond
  92. Big-hearted
  93. YouTube lover
  94. Always on the go
  95. Texture seeker
  96. Endearing
  97. Adorable
  98. Bundle of energy
  99. Timid
  100. Extreme sense of fairness
  101. Carefree
  102. The reason I live
  103. Heart of gold
  104. Nothing gets in his way
  105. Talents outshine his difficulties
  106. Laid back
  107. Sensory
  108. Full of character
  109. Lego lover
  110. Little princess

What wonderful words! What fabulous families, proving everyday how perfect every child is regardless of any diagnosis. They have said it far better than I ever could!

See all of the responses in Miriam’s video, “More Than a Diagnosis.” 

Follow this journey on Faithmummy.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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.

Lead photo source: YouTube

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When I Tried to See the World the Way My Son With Autism Sees It

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You look may look at my son and see a child with autism. Or you may look at my son and think he doesn’t “look autistic” at all.

But when I look at him, all I see is his bright toothy smile, his infectious giggle and the long locks of brown hair he seems to hide behind when he talks to people. I see my son!

(Who has autism.)

One of the wonders of humanity is that two people can look at something and see very different things. It’s all a matter of perspective.

You could see a hurdle where I see a challenge.

You may see sadness where I can feel joy.

You may see difficulties where I see strength over adversity.

You may see weakness where I see bravery.

You may see a puzzle where I see wonder.

You may see a label where I see my son.

If all you see is the label when you look at him, then you are missing out on so much!

But this is the complex world my son has to navigate his way around. And as his mother, I had to learn how to support him to make sense of it all.

How could I do that when we live in a world in which people’s opinions differ so vastly, and their past experiences shape how they interact with him? How could I understand how he feels and help him make sense of this world, and help others see who he really is?

Simple… I had to change the way I viewed my son’s world. The ups and downs, the highs and lows, and the challenges he faces daily. Not to mention the inner strength and talents he has within. I had to change my perspective and try to step into his shoes to see the world as he sees it.

You see, people may think he just chooses not to leave the house and is a “recluse.” But imagine a world in which complex interactions and going beyond the safety of home floods you with all-consuming anxiety that can make you feel physically sick. Now can you understand why stepping outside is so daunting for him sometimes?

People may think he doesn’t understand what they are saying, so they talk over him or ignore him completely. However, try to imagine how it feels to struggle following the ebb and flow of conversations. Not knowing how and when you are meant to respond, or what people’s facial expressions actually mean. I feel it’s no wonder he avoids conversations with people who don’t know him very well.

People may think he has no sense of humor or can’t take a joke. But instead, try to imagine living in a world where people say things they don’t really mean and make jokes about things that just don’t make sense. It’s not that he doesn’t have a sense of humor, he is really funny and makes people laugh every day. In fact I say he has a giggle that is infectious.

People may think he wants to control things. For a second, just picture how it feels to not be able to predict what is going to happen next, and how out of control this would make you feel. And maybe then you will realize why he feels the need for control or routine.

He may have difficulty seeing the bigger picture of what’s happening around him and seem like he is in his own world, and people might think he is ignoring them. Just remember that his world is rich and full of intense experiences. He sees and feels things so vividly that sometimes it can be hard for him to switch his focus to anything else.

Sometimes people think he is rude or that he doesn’t care about other people’s feelings. Try and keep in your mind that people’s rules can seem unwritten, confusing and mysterious. Imagine not being able to understand how other people feel, what they could be thinking or even that they are giving clues about their emotions through their body language. It’s not that he doesn’t care, he just doesn’t experience emotions like you do. 

Just imagine…

woman putting her face on shoulder of young son
Michelle and her son.

How would you feel if you had a really creative mind full of amazing ideas but no one recognized your potential just because you didn’t have the words?

How would you feel if you had so much love to give, but people didn’t know because they didn’t enter your world to feel it for themselves?

How would you feel if you could see the beauty in the things other people might ignore and people dismissed the things you were passionate about?

How would you feel if people wanted to change you, and said that the things you like to do weren’t socially acceptable?

How would you feel living in a world that doesn’t recognize the potential that lies within you because of a label?

Imagine…

Just for a minute, put yourself in his shoes! How frustrating must it all be at times for him?

If people don’t learn to see things from a different perspective, my son’s perspective, then they may never see the wonderful talents that lie within him. They may never see beyond the challenges and labels he faces, to view what he has to offer the world.

And this is why I do what I do. This is why I fight so hard to raise awareness, understanding and acceptance. No matter what day or month it is. Because autism is part of who he is, but not all he is.

I want to open the window of perspective and blow away the cobwebs of ignorance, so my son can hopefully live in a world that is far less confusing, much more aware, and has a greater level of acceptance than ever before.

It’s all just a matter of perspective.

Follow this journey on A Slice of Autism.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about 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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Video Shows Sensory Overload From the Perspective of a Boy on the Autism Spectrum

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Editor’s note: The video in this article shows flashing lights, bright colors and loud, sudden noises, which some readers may find triggering.

Alexander Marshall, 10, of West Yorkshire, England, is the star of The National Autistic Society’s new Too Much Information campaign, and he’s featured in a short video that shows what sensory overload can be like.

The video is shot from Alexander’s point of view during a trip to the mall. From noises to smells to bright lights, it shows all the things that might cause Alexander, who was diagnosed with autism two years ago, to have a meltdown.

After a number of triggering visuals and sounds, Alexander is unable to maintain his composure in the video. People pass by and give Alexander and his mother dirty looks as she tries to calm him down. “I’m not naughty, I’m autistic,” Alexander says at the end of the clip. “And I just get too much information.”

“When there are a lot of people barging past me, more often than not I will break down,” Alexander told The Guardian. “If I’m at home I would go to my bedroom, but if I’m in a public space I might just break down.”

“We’d love people to realize that he just can’t help it,” Alexander’s father, Ben Marshall, added during the family’s interview with the U.K. publication. “Judgmental looks and comments stop us being able to focus on Alex. He isn’t being naughty, he genuinely can’t help it.”

The National Autistic Society also released a behind-the-scenes video from the Too Much Information shoot, explaining how they cast Alexander and what those in the autism community wanted the campaign video to show.

“The alarms, the TVs, the stares you get from the public, even the sound of a plastic bag — these are things that autistic people told us they have to endure on a simple trip to the shopping center,” Mark Lever, Chief Executive of The National Autistic Society, said in the behind-the-scenes video.

“We want people to see the looks and stares Alexander and his mom get on a shopping trip and perhaps ask themselves, have they done that before in a particular situation?” Lever added. “And maybe after having seen the film, they might react differently in the future. Then in doing so, they really will have made a world of difference.”

The campaign aims to “bring about a lasting change in the public’s understanding of autism,” according to The National Autistic Society website.

World Autism Awareness Week is April 2-8 in the U.K., and today marks the first day of National Autism Awareness Month in the United States.

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Autism and Hope: Why I Share Stories About My Son

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mom hugging son Hope. Only four letters, certainly not a long word — but a big word.

Wikipedia defines hope as “an optimistic attitude of mind based on an expectation of positive outcomes related to events and circumstances in one’s life or the world at large.” Like most of what she wrote, Emily Dickinson’s definition of hope is much prettier. Miss Dickinson gives hope wings:”Hope is the thing with feathers that perches in the soul and sings the tune without the words and never stops at all.”

April is Autism Awareness Month, and there will be stories of hope and feathers everywhere you turn. From families of recently diagnosed children who are struggling to find the feathers in their souls to parents of adult children who found their feathers decades ago. Some days, as parents we experience more molting of our feathers than we like, which makes us feel exposed and vulnerable, but, in time the old feathers are replaced with new ones and our ability to hear the tune of our feathers returns.

Since the first moment I knew it was autism, I felt the feathers perch in my soul. At first the feathers were small as I had to grieve and accept that what I once hoped for him may change. I had a hard time feeling the feathers back then. As time passed, the feathers grew, and I clung to each and every feather that perched in my soul — for without the feathers, the only alternative was falling and crashing as I let go of hope. As one milestone after another passed him by, at first I would crash, but in time I felt the tickle of hope that one day perhaps, he would catch up. With every feather that fell away, a new one took its place helping me to hear the tune again.

When I would beg him to “look at me” I felt the feathers tickle my soul as I occasionally caught a glimpse of his eyes and saw his own hope reflecting back in my own. Ryan’s feathers tickled his soul hoping one day I would understand that he can see me and hear me, even if he is not looking at me. Ryan clung to the hope that I would hear the unique and beautiful tune his soul was playing while drowning out the tune I always expected to hear. Some days I listened more than others.

In those early days, the feathers that perched in my soul were small, thus the tune they played was quiet. Over time though, the feathers grew and the tune got louder. I began to feel and hear hope more frequently. Hope was found in an unexpected hug, a beautifully written essay, a song being sung from the shower and communication through scripts that brought him joy. Yes, I swear I felt the feathers grow.

Hope is a powerful word, and without it, Ryan would never be where he is today. It was hope that caused me to push, nag and prod him along. Not hoping for change, not hoping for him to be someone else, just hoping for him to be the best him he could be. And for me to accept that the best him, the perfect him, was better than the him I once imagined all those featherless years ago.

Decades ago, mothers were told there was no hope; not even the tiniest feather could be felt awakening their soul. They were told to institutionalize, give up, move on, stripping them of their feathers and muting the tune their soul was so desperately trying to play. Without hope, there were no feathers, there was no tune, there was no “optimistic attitude of mind;” there was just despair and hopelessness. My heart aches for the parents whose feathers were stripped away by those who thought hope was a waste of time.

Today, when I share stories of Ryan’s progress, of how far he has come, I write stories of hope, I share the gift of feathers. People tell me, “Ryan gives me hope for my son/daughter.” I love that, but at the same time it concerns me. I worry I may give “false hope” — false feathers, as each autistic individual is different, but then I question… is there such a thing as false hope? Who wants to live without hope? Without feathers perching in your soul and singing a tune? Sure, the tune is different for my child than yours, but we still need to find the feathers that enable us to hear the tune in the first place.

If I stop sharing my feathers then I am no better than the so called “experts” who stripped away the feathers of all those mothers years ago. So I will continue to share my feathers, my hope, my tune because just like birds cannot fly without feathers, dreams and hope cannot either. Although I am no Emily Dickinson and my words will not span into the next century, for parents loving a child with autism, I’d like to think in this century, in this moment, I too give hope wings.

boy with brown hair and glasses smiling at camera
Hope is necessary. Hope is needed. Hope is real. Hold onto it. Feel the feathers inside you, inside him. They are there. Your child is trying so hard to fly, and he wants you to fly with him and hear his beautiful tune even if the tune sounds different than anything you ever expected to hear. The tune is beautiful, and with or without the words, you can hear it, but you have to listen, you have to hope so the tune for both of you “never stops at all.”

Follow this journey on The Awenesty of Autism.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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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When I Say, 'My Child Is Autistic,' and You Say, 'I'm Sorry'

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It took me a while to be able to say the words “My daughter is autistic.” For a while, even when I said them to myself, they sat like lead on my tongue. When they did come out, it sounded like a stranger’s voice or an awkward attempt at speaking a foreign language.

It took even longer for me to be able to use those words in everyday conversation. Piper had a diagnosis for months before I even hinted at it on social media. Beyond a small group of friends and immediate family, the information was on a need-to-know basis. This wasn’t because I was ashamed or sad; it was more of a motherly attempt to protect her. What I feared the most was that once those words were out there, people wouldn’t see “Piper” anymore. They’d see a preconceived notion of autism first.

After a while, I realized saying those words wouldn’t change how my friends looked at Piper. I realized if they did, then perhaps friendships would be reevaluated and the circle would get a little smaller. When I finally decided to share, I did so casually and received a warm, genuinely supportive response –the kind you would expect to receive from true friends.

What you can’t predict, however, is the response you’ll get from strangers or acquaintances. The worst of which is simply, “I’m sorry.”

“I’m sorry” is something you say to someone when they’ve experienced a loss. Nothing about my child being autistic is a loss to me. The day she was given her diagnosis, we didn’t lose a “normal” child. To the contrary, we gained so much! We gained affirmation that there was a solid reason for her delays. We gained a therapy plan. We gained an incredible support system in the autism community, and most of all, we gained insight and perspective into our child’s beautiful mind.

I won’t be angry with you if you respond with “I’m sorry” because I realize the intention is not a negative one. Most of the time, it’s just a knee-jerk reaction. Perhaps what you were trying to say is that you are sorry we’re dealing with so much, right now. Please, don’t feel that way. It may be overwhelming at times, but I’m not sorry.

daughter smiling, black and white photo
When I say the words, “My daughter has autism” and you respond by saying “I’m sorry,” please know it does make me sad. It hurts me that you might think I view my daughter’s diagnosis as a burden. It is not. To the contrary, the countless appointments and therapy sessions over the past several months have been a blessing. They have given me extra time to bond with a pretty amazing person!

Don’t be sorry for me, for there is no reason. In this situation, I am sorry for you. I’m sorry you don’t know her like I do.

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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