To the Mother Afraid to Ask Questions About My Son

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To the mother watching my son,

I see you over there, watching with a somewhat quizzical look, afraid to ask questions because you don’t want to offend me, and trying really hard to hide that your eyes keep shifting back to my son. I know that look because many years ago, before my son came into my life and I began to understand what autism was and wasn’t, I had that look too.

I was scared of children who were “different”…I didn’t know what to say to them, how to act and I definitely did not know what to say to a parent. I may have been guilty of saying “I’m sorry” once or twice, something I now deeply regret as it has been said to me on occasion and I now understand what a horrible phrase that can be. So please let me tell you about my son and let me help you learn how to enter his world — because I promise you once you are in, it is for life, and it is a pretty great place to be.

He is different — not less, not weird, not more special than your child, just different. I like to compare this to different ice cream flavors. We are all different flavors, really — each bringing different elements into the world and all ultimately bringing happiness and joy in our own ways. Yes, he has autism, and no, I do not know why. There are days I wish I did, but ultimately that is not important to me. What is important to me is making sure he lives and experiences life to his fullest potential, whatever that may be.

As you watch him, you will see that sometimes he spins in circles, a ritualistic behavior that I have come to realize calms him when he is feeling overwhelmed. And often, loud noises, especially televisions, are too much for his sensory system, and he might yell until it is turned off. But please know this is not my child demanding to have his way; rather, this is his way of trying to stop the over-stimulation that could quite possibly be causing him physical pain.

The author's son, walking on a track,

He might not say much to you at first, in fact he might not acknowledge you at all — but do not mistake that for not listening, because believe me, that is far from the truth. My boy listens and hears everything going on around him, often times referring back to things said from days before.

And even though he might not give you the acknowledgement in the traditional form you are looking for, he will remember. He will remember that you spoke to him. And it may not be the next time, but eventually he will speak back to you — when he is ready. Please do not rush him, and please be patient enough to wait for him because he is worth it.

When my boy is happy, a certain warmth and love emanate from his entire being, and when he laughs that pure and uninhibited laugh, it is with his whole body, something that is amazing to see and impossible to not get caught up in. When you become one of “his people,” you will find that his infectious spirit stays with you even you are apart. I really cannot explain it — I can just feel it even now as I type this while he is spending his day at school. Yes, I am his mother, so I might sound a little biased, but trust me, “his people” love him just as much as he loves them.

I know that often times things we are not familiar with can cause fear and uncertainty. I was once just like you, so I recognize the look on your face and the questions in your eyes. And for that reason, I am reaching out to you to say it is OK to ask me questions, and no, you will not offend me. What will offend me is if you turn away and do not try to open your heart to an incredible child. He is worth it, as is every child and adult on the spectrum. Take the time to get to know him and to find a way into his world. And believe me — you will not regret it.

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? Check out our Submit a Story page for more about our submission guidelines.

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7 Things I Wish People Would Remember About Me as a Person on the Autism Spectrum

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As an adult on the autism spectrum, I have been doing advocacy work for quite a while. And there are a lot of things I find myself repeating over and over again, occasionally to the same people. This is a list of some of the things I wish people would remember about me, personally, as someone on the autism spectrum.

1. No two people on the autism spectrum are exactly alike. There is a well-known saying in the autism community: “If you’ve met one person on the autism spectrum, you’ve met one person on the autism spectrum.” Each person is unique. This means what might work for me may not actually work for someone else on the spectrum. And what might work for someone else may not work for me.

This also means…

2. Just because one person on the spectrum feels a certain way about a topic doesn’t mean that I feel the same way they do. Perhaps someone on the spectrum has voiced their opinion about how they would rather be accepted for who they are than find a way to prevent autism. Or maybe someone has said that they would rather be called “autistic” than “a person with autism.” I personally don’t always see eye-to-eye with others who are on the spectrum, and feel that some topics aren’t so black or white. So please remember to ask me how I feel before assuming I agree with someone else.

3. I may not always be social, but that doesn’t mean I don’t want to be. I may rarely use the phone. I may not always respond to my texts. And I may struggle to join even a small group of friends in a social activity. This isn’t because I don’t enjoy being social. In fact, I find myself crying tears of joy when I receive an invitation to go somewhere – not because I want to go, but because someone thought of me. And if somehow everything works out and I feel like I can take part, I’m thrilled! So please, don’t forget to include me.

4. Just because I’m able to do something doesn’t always mean it’s easy for me to do. Sure, I can drive a car. But that took years of practice, and I’m limited as to where I can go. I may be able to speak. However, I rarely say things the way I mean to. And forget about understanding what others are trying to get across to me. These are just a few examples. You can give me a small push to try and do things that are difficult, but remember that I do know my limitations as an adult.

Sometimes, I really wish people could walk in my shoes for a day. They might realize just how exhausting life can be for me. I’m not always trying to make excuses. I’m not always just being “lazy.” When I say I’ve had enough, I honestly mean it. I wish more people would respect that and take it seriously. I wish more than ever I could have more energy throughout the day, but I am just not able to. Pushing me too hard will only result in a meltdown.

Which brings us to….

5. A meltdown is just as difficult for me to handle as it is for you to deal with. In fact, when I was younger, it was even more difficult for me to handle because I didn’t know how to cope with it at the time. Now that I’m a bit older, I’ve learned calming strategies. I have a better idea of what will help and what won’t. I really try not to have a meltdown. But when I do, it’s not because I want to. And it’s not something I do to get attention.

6. I don’t mean to be annoying. I’ve apologized for this so much in my lifetime. In fact, I’ve probably annoyed some people by apologizing for being annoying. Sometimes I’m annoying because I don’t realize I am being so. Sometimes it’s because if I don’t say or do something right that second, I will feel like I’m about to explode. I really don’t like that I’m annoying.

7. I am on the spectrum. I know I don’t seem like I am on the spectrum to most people. I don’t fit their usual stereotypes. I make wonderful eye contact. I am very social. I can speak very well. I’m so independent with so many things…but it hasn’t always been this way. It’s taken years of hard work to get to this point, and I’m still working on things you may never know about. Isn’t that what everyone wanted: for me to be able to function (mostly) independently through everyday life?

These are just a few of the things that I wish people would remember about me as an adult on the autism spectrum. I can’t speak for anyone else.

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5 Ways Autism Makes Me Unique

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If you’ve met one person with autism, you’ve met one person with autism. Every person who has autism is unique in his or her own ways. Here are 5 of mine.

1. I am able to accomplish anything I put my mind to. Autism has given me an amazing ability to focus on my special interests and never quit. My grandma, Helen Olmsted, was an accomplished author of three published books and wrote and directed over a hundred murder mystery plays. I also desired to be a published author and see my book in Barnes & Noble. I wrote a three hundred page book on theology and my book proposal was rejected by over 20 publishers. I had invested over 1,500 hours writing the book. Instead of giving up my dream, I wrote a second book, “A Parent’s Guide to Autism,” and on April 5, Charisma House published it.

The only difference between a successful person and a failure is a successful person rises one more time than he or she falls.

2. I sound like a Transformer. Autism caused my speech to be delayed, and my brother Chuck at 7 years old bragged to his friends, “My brother sounds weird; he speaks Norwegian!” When I was a sophomore in high school, I was chatting on the phone with a girl who asked me, “Why does your voice lack inflections? You sound like a Transformer.” I had a crush on her and felt embarrassed by her question. In interviewing others with autism in the process of writing my book, I discovered I was not the only Transformer on the planet. We on the spectrum are more than meets the eye.

3. I love to follow routines, and have never missed a scheduled day of work. At the beginning of 2010 NFL season I purchased two tickets for Brett Favre’s final game at Ford Field in Detroit. Brett’s consecutive start streak had reached 309 games. On Monday night, December 13, 2010, Brett’s streak ended due to an injury to his right shoulder. I like to joke, “If Brett Favre had autism he would’ve never allowed any shoulder injury to break his streak.”

The day after Christmas, 2014, I woke up an hour before my shift and felt horrible from bronchitis. I did not want to break my iron streak of never missing a day of work. My concrete thinking reasoned, “If a nurse sends me home for being contagious, my streak will continue because I showed up for work.” I put on my gray scrubs outfit and stumbled to my Ion. I felt dazed as I drove the five miles to work. My head was spinning faster than the roundup ride at the State Fair.

When I entered the conference room, I said to the charge nurse, “I feel like I am about to pass out; please take my temperature.” After placing the thermometer in my ear, she exclaimed, “Your temp is 103. I’ll call the supervisor and tell him you need to go home immediately.” My consecutive streak continued.

4. I have never had a credit card. Autism causes me to have obsessive compulsive behavior, so I have never dared own a credit card. When I order an item online I have my wife use her card. About 25% of adults with Asperger’s have clinical signs of obsessive compulsive disorder (OCD.) Thus a credit card could have devastating financial results for us.

5. I have a savant ability for memory. Only about 10 percent of autistics belong in the savant category, though most savants are autistic. I can quote word perfect over 10,000 Scriptures including 22 complete books of the New Testament and over 5,000 quotes. While in college, this gift enabled me to mentor and intern under internationally known TV evangelist Dr. Jack Van Impe.

When you meet someone who has autism, remember that each one of us has his or her own unique gifts. As Temple Grandin states, “I am different but not less.”

Follow Ron’s journey on Spectrum Inclusion.

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? Check out our Submit a Story page for more about our submission guidelines.

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To the Dads Who Raise a Loved One on the Autism Spectrum

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To the dads who raise a loved on the autism spectrum,

Jim Valvano once said, “My father gave me the greatest gift anyone could give another person, he believed in me.” And that’s where my story begins with this letter to you today.

When I was 4 I was diagnosed with autism. Through all the uncertainties the diagnosis would bring my family, the one thing my dad always remembered to do was believe in my abilities. The unconditional love he provided me has made a lasting impact in my life.

When my dad recently retired, I was asked to say a few words. I said he had become my hero for the supports and services he provided me when the schools wouldn’t give them to me. When we had to fight for an out-of-district placement, he led that charge as well. My dad cared, and through that care he also became one of my best friends.

Now I work to share the lessons my dad taught me with other dads in our community. When I speak to parent groups, a common message we discuss is how any man can be a father but it takes someone special to be a dad.

So for all the dads who raise a loved on the spectrum, thank you.

Thank you for going above and beyond for your children.

This Father’s Day please know we appreciate everything you do. Your impact will move mountains for your child. We can’t thank you enough for that.

And to my dad, I love you with all my heart and always will. Thank you for bringing me in this world and giving me the opportunities to shine. I hope to follow by example when I’m a dad one day.

This post first appeared on KerryMagro.com.

The Mighty is asking the following: What’s one thing you want to make sure the special needs dad in your life knows? Check out our Submit a Story page for more about our submission guidelines.

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To the Boy at the Amusement Park Who Pretended to Be Autistic

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You don’t know me, and I don’t know you. I was at Cedar Point in Sandusky, Ohio, on June 7. My three friends and I stood in line the new ride, The Valravn. A nice teacher from Columbus and her boyfriend stood in front of me, and you and your two friends waited behind me. The line for this ride was three hours long and by far the longest three hours of my life.

You and your friends were messing around, as teenagers do, trying to be funny but really just being immature. Then you drew the line.

You laughed and said, “I’m autistic and retarded!” Your friends laughed. I wanted to get out of line.

I have friends with disabilities and a lot on the spectrum. They go through daily struggles, and they accomplish so much. I have seen some have to fight for their lives. I tried explaining to you how that isn’t something to joke about. You stood there and laughed.

I don’t hate anything in life except the second word you chose to use. The R-word is a derogatory term and should never be used. It makes me cringe to think about. People like you need to be educated on why that word is not OK. It is offensive to me, to people with disabilities and to their friends and family.

For you, I was probably just another face you were trying to annoy, but for me, that day was another realization this world still needs education. And it doesn’t matter what age you are. 

I will probably never see you again, but if this spreads to you please think about what you say before you say it and how your words and actions can affect others. Your words and actions do matter.

One day I hope everyone can find love and acceptance. One day I hope all people with disabilities will be looked at like people — because they are people.

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. Check out our Submit a Story page for more about our submission guidelines.

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My Reaction to That Sensory Overload Virtual Reality Video as Someone on the Autism Spectrum

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The Mighty recently reported on a virtual reality experience, produced by the National Autistic Society, depicting sensory overload through the eyes of a boy on the autism spectrum. We asked our contributors, if they felt comfortable, what they thought of the video.

As someone on the autism spectrum, I have had my share of meltdowns and panic attacks. So when I was asked for my opinion on a new virtual reality video depicting sensory overload, I was a bit nervous. But I decided I was up for the challenge and sat down at my computer to go through the experience.

Editor’s note: The video below contains flashing lights, bright colors and loud, sudden noises, which may be triggering for individuals who experience sensory overload.

The first thing I noticed was the woman in the video said something (obviously talking to the camera), and I couldn’t even process what she had said because it was said so quickly. This is definitely a real issue for me when it comes to everyday functioning. I went to pause it to see if I could understand it better, and my mouse slipped.

That’s when I realized I could pan the video 360 degrees. This makes the video much more realistic. I tried to look at everything going on, but then I heard this horrible, high-pitched sound. It hurt my ears. (Of course, because there was so much to take in, I had to watch the video a second time. It was only then that I understood the high-pitched sound was a store alarm going off, as the video takes place in a mall.)

The woman started talking again. I panned back to look at her. She was trying to tell me to calm down, but this only gave me more information I needed to process amidst everything else. It didn’t really help.

Soon, I realized “I” (as a person in the video) was starting to hyperventilate. This was getting bad. It was either a panic attack or a full-blown meltdown. And while the picture began to fade to black to simulate closing my eyes, the sound also died down. I can only assume that would imply plugging my ears. So far, pretty accurate.

Then, suddenly, the woman and I were outside the mall. I had stopped hyperventilating. The woman said everything was fine. But there’s something about this people may not fully understand. Although I was out of the overwhelming situation — I had already been through the meltdown and panic attack — everything was not fine. If this had actually happened, I’d be exhausted and it could take hours for me to be OK again.

So, overall, the video was definitely interesting. I think there could have been a bit more of a crowd of people in the mall to make it so you couldn’t figure out where more of the sounds were coming from. But the depiction of a meltdown due to sensory overload is pretty well done.

As the boy says at the end of the video, “I’m not naughty. I’m on the autism spectrum.”

Sensory overload is real. It’s not something to be brushed off or something I can just get over. I hope this video will help more people understand that idea.

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