5 Things I Want Everyone to Know for Autism Awareness Month

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Jim Lichtenstein's Act of Kindness for My Son With Autism Made Me Want to Cry

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The Henry Ford Museum/Greenfield Village complex in Dearborn, Michigan, has been a large part of the growth of my son with autism. When CBS started producing a show there, my son and I were excited. I started stalking @cbsinnovationtv on Instagram. We enjoyed looking at behind-the-scenes photos on Instagram and watching the show. Perhaps someday we’d get a chance to see them record live.

Well, last July the crew spent time taping at the complex, so off we went on an adventure to stalk, I mean watch, them tape. After some paparazzi-like behavior, we finally found a spot to watch the recording. It was fun, but we couldn’t get close enough to hear well, and we eventually had to go. I left them a comment on Instagram that we got to see them but couldn’t stay long enough to introduce ourselves. 

CBS producer Jim Lichtenstein replied that they’d be back in September and to look for him and say hi. You bet your bottom dollar I’d do just that! In September I watched the Instagram account to see when Innovation Nation came back to town. This time we found the crew more quickly. In the midst of historical cars, I walked up to Jim Lichtenstein with my boys and introduced myself. He recognized me from Instagram. Then the magic began.

First he walked us over and introduced us to Mo Racca, the host. He snapped a picture for us. Then Mo and Jim took time to talk with my son. I tried to contain my excitement for him. What a gift to give a child who has social challenges!

When it was time to start taping again, we dutifully moved over to watch with other spectators. Imagine my surprise when Jim walked over to us, inviting us to stand with him behind the recording table. My son the gadget guy got to watch from behind the monitors and see all the equipment being used.

standing behind the tech table with Jim Lichtenstein

Then Jim started explaining to him how things worked. He took out his producer’s notebook and showed my Aspie the scripts, telling him what happens, etc. I was so touched. The tech-loving boy didn’t seem to be paying attention, but I knew he was listening. I leaned over and explained, “My son has Asperger’s syndrome, which is on the autism spectrum. It may seem like he’s not listening to you, but he is.” Jim didn’t bat an eyelash.

This autism mom almost cried when Jim offered his headphones to my 9-year-old. That is not something you see every day. He allowed my son to listen in, to stand there like one of the crew members, to experience the making of a show he enjoyed watching on TV. 

wearing headphones with Jim Lichtenstein

When the taping session was complete, we followed the crew to the next spot. Unfortunately, it takes much longer than you realize to set up a scene for taping and we had to leave before they started. We walked over to thank Jim and say our goodbyes. Jim opened his notebook, dug out a special laminated crew card, and presented it to my son for a souvenir. I might have fallen into a puddle of tears if we hadn’t been in public. My son walked out of that museum a happy kid. 

son holding crew card from Jim Lichtenstein

I must admit, when I see those “CBS Cares” commercials on TV, I respond rather cynically inside with, “Yeah right. What a bunch of political mumbo jumbo.” But on that day in the Henry Ford Museum, one CBS producer really did care. He reached out to my son and gave him an experience I doubt he’ll ever forget. I know I won’t forget. Thank you, Jim Lichtenstein!

The Mighty is asking the following: Share with us an unexpected act of kindness, big or small, that you’ve experienced or witnessed in an everyday place. 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 May Question Why We Try Therapies for Our Son With Autism

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I love the autism community. I love the passion, enthusiasm and commitment parents, caregivers and therapists have for the children and adults on the spectrum.

However, I find that same community can be a much-divided one, too. Pick an issue and there seem to be two opposing sides. ABA therapy is good, ABA therapy is bad. A biomedical approach works, a biomedical approach is a waste of time. On any issue, it seems lines are drawn in the sand, and that same enthusiasm and passion can quickly turn into a debate.

Michael Hollenbeck and his sons
Michael and his sons.

Even the most basic issue, such as whether or not to do any therapy, can cause disagreements. Across message boards and at conferences, I have encountered many people who have told me, “Why do any therapy at all? You should just love your child the way they are.”

I’m very fortunate to have a wife who asked the same question I did when our 2-year-old son Cameron was diagnosed with autism: “What do we need to do for our son so he can live on his own terms?” Our family set out on a journey to leave no stone unturned.

During our four years on this journey, we have tried different therapies and different biomedical approaches. Some have been amazing and some haven’t worked at all. There have been a lot of tears and challenges along the way for both my wife and me and our son.

The message I have for people who say, “Stop trying to change your child and love them just the way they are,” is this: It’s not about changing our child, it’s about giving him an opportunity.

My worst fear as a parent of an autistic child is who will take care of my son when my wife and I aren’t able to or when we pass. We don’t want our son to spend what should be the best years of his life living in an institution on someone else’s terms. We want him to live a life where he can support himself, make his own choices and see what this amazing world has to offer.

Of course, none of this is guaranteed, and he may have to live with assistance anyway. Because of some of the therapies we’ve tried, he may grow up being upset at my wife and me. He may grow up and thank us, or the truth may be somewhere in between. Either way, my wife and I can look him in the eye and say, “We did this out of love, so someday you can live the life you want to live and give yourself every opportunity to make choices that make you happy.”

Our son is now 6 and his progress has been amazing. He’s becoming more verbal and social every day. My wife and I feel confident we’re on the right path for our family. Even though some people may disagree with that path, I hope people will come to respect it as much as we respect whatever path others with opposing views choose.

Maybe we have wasted time and money, but one thing for certain is that we aren’t on this journey for change but for opportunity. As the old saying goes, “You don’t love your children because they are bad or they are good. You love them because they’re yours.”

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? 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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For the People Afraid to Ask Questions About My Child With Disabilities

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I recently had a friend tell me she was not sure it was OK to ask me questions about my child who has multiple disabilities. In fact, she told me she wasn’t even sure the right questions to ask to begin with. And it got me thinking…

When we see something we don’t understand or is different we feel compelled to want to know the “why” or the “what happened.” Perhaps it’s part of the survival instinct. So, often times when someone approaches me and says, “What’s wrong with him?” my instinct is to say back, “Rude people are what’s wrong with him.” When I shift my schema and recognize that even in those awkward moments there is the possibility to make it teachable, I can have a lot more empathy for the individual asking. After all, I am not sure I am that much more comfortable with a stranger asking me a more direct question either. If someone were to asks, “Why is he making that hooting noise over and over?” I might have absolutely no idea myself in the moment.

bracelet that says just ask

Parents, whether we like it or not, we are the conduit to bridging our children with this
society. Even if one person out of 10 who ask, are asking to be nosy or rude, if we do not respond as an advocate, we make the assumption that all people who ask in that way are being nosy or rude. So, instead of “mind your own business” or “what’s it to you,” I try “I think what you meant to ask is that you notice that he can’t talk. This is his speech generating device, would you like to see how it works?” or “My child can understand everything you say and the way you asked that in front of him makes me uncomfortable. There is nothing wrong, but it seems like there is an aspect of his behavior you would like to know more about. He has autism and maybe one of us can tell you more.” Pollyanna much? Yes. But I believe it’s the only way we will truly build awareness.

On occasion, people want to ask how they can help. A lot of times people don’t realize we need help. And frankly, many of us have no idea what to say when you ask if you can help. Sometimes we feel our honest requests for help would be too much to ask of a family member or friend. And sometimes people just don’t want to do what you do need… so their perception becomes that you are are not taking their help when they offer up something unuseful. All can serve as barriers to asking the right questions… or giving the right answers for assistance.

People often make assumptions instead of asking at all. A young woman I know asked for advice in a situation about a member of her youth group. This teenager has autism and when the entire group is together she tends to get loud and runs out of the room.  This young woman sighed and said, “She only does it in big groups… attention… We are thinking of ways to let her know that maybe this group isn’t a good fit for her.” We discussed the fact that perhaps they were misreading the function of the girl’s behavior. She wondered aloud if they should contact the girl’s mother to try to figure it out. I wondered aloud what would happen if they just asked the girl herself, since she is her own expert. We cannot help but to look at others using our own lenses. But sometimes our lenses are smudged, rose colored or even broken. By not asking in this kind of situation, others assume they know what is best.

Let’s face it… it’s uncomfortable to ask about people who are different than we are. We may be curious, afraid of coming off as rude or have misread others cues. We may not want to know the answer; we may not want to change our own ways. We may already have assumptions and think we are right, we may be uncomfortable or frankly, some of us… we may just not care.

For those of us being asked, we may be offended, we may be hurt, we may not want to talk about it. We may not know the answer, we may not want to admit to an issue or call attention to it. We may not want to be reminded. We may not want to be rejected.

So, let’s all agree on something: asking and telling can be difficult.

Let’s move past it.

Families like mine… we are the awareness. How you choose to let that manifest is up to you. In my world, however, if you ask me, I promise to tell you.

Follow this journey on Running Through Water.

The Mighty is asking the following: Describe your experience of not quite fitting under one specific diagnosis or a label your community identifies with. 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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Keira Meikus Gives Speech About Autism on School's Morning Annoucements

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Last week, Keira Meikus, a 9-year-old at Our Lady of Sorrows Catholic School in Homewood, Alabama, used her school’s morning announcements to make a powerful statement about autism for Autism Awareness Month.

“I can’t speak for everyone who has autism,” she says in her speech (below), but I’m sure most want what every typical person wants — to be accepted and to belong.”

Her full speech reads:

Good morning fellow OLS students! April is Autism Awareness Month, and I was asked if I wanted to talk about it. I do want to talk about autism acceptance.

A person who has autism has a brain that works differently than a typical brain. Neither is better — they are just different. There is a spectrum, like a number line. One person with autism may be like a 1 on the spectrum so you only notice a little difference, but someone else may be a 10 with lots of differences.

Some people with autism have brains that work so hard and see and process so much so fast that they cannot even walk or talk because their brains are holding onto so much other information.

I have autism. I am like you. I go to school, I take tests, I watch TV, I like music and playing with my friends. I am also different than you. Some noises hurt me, I flap my hands when I get excited or overwhelmed. I don’t always make eye contact when I should, and I don’t always know when someone is being serious or joking.

I can’t speak for everyone who has autism, but I’m sure that most want what every typical person wants — to be accepted and to belong. Autism is just part of who we are.

“We are incredibly proud,” her mom Sarah Charles told ABC News. “We knew she was made to shine and she’s shining at 9.”

Earlier this week, a 10-year-old made headlines when his mom shared a poem he’d written about being on the autism spectrum. More than 10 thousand people shared the original copy of his poem, “I Am,” where he talks about wanting to fit in while accepting his differences.

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The Article My Nonverbal Son Wrote to Share His Experience With Autism

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The piece below was written by my 14-year-old nonverbal, autistic son, Jack.  He wanted to write it for his school newspaper in honor of Autism Awareness Month. Three years ago, he was “unlocked” and learned to communicate by typing on a letter board or iPad. Since then, he has educated our entire family on what his life with autism has been like and the unique challenges he routinely endures. He attends seventh grade in our neighborhood school and is mainstreamed in all his classes with the help of a 1:1 aide. He makes honor roll every quarter. Jack is passionate about educating others on autism so that he and kids like him can lead full and productive lives with the presumption of competence.

mother sits with her nonverbal son as he writes with the help of a tablet
Amy sitting with Jack as he writes.
article in school newspaper written by nonverbal teen with autism
Jack’s article for his school newspaper.

Overcasting Shadows

Autism is defined as, “a mental condition, present from early childhood, characterized by difficulty in communicating and forming relationships with other people and in using language.”

Autism feels like an overcasting shadow that came and betrayed the light within me. Most people do not believe autistics are smart and can do oddly special acts others may see as strange and different; but we are very smart.

A normal day for autistics starts casting shadows and is quite challenging. Any stimulation can cause my body control severe distractions passing on autistic behavior. Keeping eye contact is very hard for me. Being loud can cause a lot of distractions.

Certain comfort of sound helps me concentrate so I may hit or bang certain items for the sound they give back to me. Each person is different in casting their own shadows pursuing an endless escape from going back into a prison of the body.

I say let sincere beings do acts of kindness as a favor to all autistics. Many lack empathy and don’t show an understanding of autism’s true sacrifices. In the future, you can say hello, smile, ask students to join your group, and not stare at students with autism.

teen boy with headphones and backpack holding a football
Jack.

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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