The 2 Words You Should Say to Someone Facing a New Diagnosis

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We’ve been through the diagnosis. We’ve been through the IEPs and evaluations. We’ve navigated education systems in three different states. I’m starting to feel like a veteran autism mom and blogger.

As seasoned and experienced as I’m feeling, I was caught off guard when two friends recently started going through the diagnosis process with their own children and I didn’t know what to say. I think I found myself tongue-tied because all I could think about were the things not to say — the well intended comments made to me when we started this journey that were meant to comfort but cut like a knife. During my discussion with these moms, those comments came rushing back into my head. Some almost came out because I just didn’t have the right words in that moment. Wow, this is what it feels like to be on the other end of this conversation. But even without the right words early on, I couldn’t bring myself to say the wrong ones. 

I wouldn’t say, “I’m sorry.” I heard a lot of these. They were always empathetic and heartfelt. But they made me feel worse, not better. I didn’t want people to be sorry for me. While this life might be different, it’s not less. While my child might miss out on some things, he’s not less. His life and his diagnosis are not things I feel sorry for; you shouldn’t either.

I couldn’t say, “He’ll be fine.” I don’t know if your child will be fine. I don’t know that Early Intervention will move mountains. I don’t know what the next 20 years looks like for you and your family. And when people told me, “You caught it early; he will be fine…” it hurt. If he doesn’t overcome challenges, if he doesn’t mainstream, if maturity doesn’t lessen his challenges… does that mean I failed? Please don’t compare our journey to that of a friend of a friend whose child has autism spectrum disorder, had therapy and is now “fine.” ASD is complex, and no two journeys are the same. Even as a mother of a child with autism, I’m hesitant to give advice, as I know my son’s autism is not your child’s autism.

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I knew better than to say, “Really? He seems so normal.” I was surprised by how much I heard this one. It seemed like a backhanded compliment. But it not only minimized what we were going through daily, it inferred that if he did indeed have autism, he was abnormal, broken.

I would never say, “Oh, I hope not.” I only got a few of these doom-and-gloom responses. They lacked empathy and pretty much damned us to a life of a misery in one simple phrase. It’s not a comfort, and it’s not helpful to try to wish away a family member’s diagnosis. It’s hurtful.  

You see, all of those phrases are overthinking and overanalyzing someone else’s situation. They don’t comfort; they simply insert my opinion when my opinion wasn’t asked. Parents facing an ASD diagnosis don’t want unsolicited advice or pity. They don’t want you to minimize their feelings or give false hope. They want you to listen. They want you to care. They want you to stay in their lives and perhaps not brand them as “special needs parents.” They want you to understand that although their lives might be taking a different turn, they still need friends. Their children still need friends. 

Then it came to me. The two simple and perfect words you can say: “I’m here.” And mean it. Mean it through every struggle, every victory and every passing year. Mean it on the days when autism is all they can talk about and on the days when they need an extra set of hands. Mean it when you’re making out the list of which children to invite to your child’s birthday party. 

They don’t need you to be an expert on autism. They don’t need you to always say the right thing. Now, more than ever, they need you to just be there.

mother embracing her son

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To the Hotel Guest Who Left the Note About the Noise My Son With Autism Made

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We were out of our hotel room for a large part of the day on Monday. So imagine my surprise right before dinner to find an anonymous note from another hotel guest complaining we were “walking too loudly” in our room above theirs. It wasn’t just a simple polite request. It was vile. The nastiness in this note was burned into my brain and, at the same time, it was a confused jumble of insults I can barely recall.

The husband took it, crumbled it up and said, “Screw ’em. We made noise in the afternoon? Big deal. It wasn’t in the middle of the night and …” I grabbed the note back. I couldn’t just let this go, especially when the room above our own was noisy with its own pattern of little feet. But in the afternoon? Who cares?

I had two choices:

1) Write an equally nasty note and be a coward like them and stick it under the door, then run. But I’m 41, not 12.

2) Be mature, go to the hotel management and use this as a chance to educate and advocate. Plus, if these folks were going to be an ongoing issue, I wanted the staff to be aware of it.

I went with choice two and straight to the front desk. I handed over the note. I asked if it was from them (I really didn’t think it would be, but you never know) and I was quickly assured it was not. Then I started talking. I said, “My son has autism. He’s no angel or perfect. He’s also 11. Yes, I’m sure someone has heard him now and then being ‘too loud.’ Please know my husband and I do our best. We’re on him constantly. This is our fourth trip here. We keep coming back because this place has been so accepting of him. They may have had to endure 10 minutes of noise. I endure it 24/7. We deserve to be here just as much as anyone else. If they would like to talk to me, have them call me. I would love to talk to them. I would love to tell them about the autism that lives with us also goes on vacation with us.”

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“Oh, also remind these folks it’s a hotel, not your house,” I continued. “You’re gonna hear noise. It’s family resort with about 100 kids running around.”

By then, three other desk staffers had crowded around listening to me, passing the note back and forth. They seemed stunned. Then came a slew of apologies from them. I appreciated it, but honestly, there was nothing they needed to apologize for. I just wanted to be proactive in case there were more complaints. I told them again to please call me if there’s a complaint, but to remember I’m trying my best. If you saw my son, the Kiddo, who first came to this resort five years ago, and saw who he is now, you wouldn’t know it’s the same kiddo. I slapped the note down on the desk and walked away.

We had dinner. I ordered a large glass of wine and tried to shake it off. Up until this moment, we’d been having a great vacation. It’s one thing to be called out for all the ways your kid behaves. It’s another thing to be harassed for it. Seriously, I’ve never read anything so obnoxious. And think about it, I’m a blogger. You know the comments I get sometimes? If I’m offended, you know it’s bad.

We did our usual routine of lots of swimming to get that much-needed sensory input. The Kiddo was snuggled in his bed with a movie. My husband and I were chilling out and there was a knock on the door. A hotel staff member hand-delivered an apology note and a box of chocolates. We were very surprised but at the same time grateful. It was clear the resort wasn’t happy with the other guest’s way of handling things but also understood the challenges we face.

Sadly, we didn’t hear a word from the person who made the complaint. I wish there were some way to talk to them. You’re probably also wondering why I didn’t post a picture of their note. That really wasn’t a hard choice to make. What would that really do at the end of the day other than make many people who already have a lot on their plate feel even worse?

You see, I get angry a lot. I’ve learned unless you do something about your situation, nothing gets better. A way to see some change is to make some. I’m not saying my Kiddo is perfect in every situation. Neither is the way I parent. But we can have a constructive conversation about it. Deciding to go the hotel staff and being upfront gave me the chance to see all this awareness work we’re doing works.

To the person who left the note: I’m sorry if my Kiddo’s flapping feet ruined your vacation for roughly 10 minutes in the middle of the day. But your anonymous note was the wrong move. We could’ve shared a side of fries. Or I could’ve thrown them at you.  One or the other. But seriously, if you ever witness behavior you don’t understand, ask. Talk to us. Listen. I want to have the conversation.

Follow this journey on Autism With a Side of Fries.

The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? 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 “Share Your Story” page for more about our submission guidelines.

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Teen With Asperger's Syndrome Opts to Educate Kids Who Beat Him

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Gavin Stone is a teenager with a lot of compassion. According to his mother’s viral Facebook post, after a group of kids surrounded and beat her son on Friday, June 26, Stone opted not to press charges and instead teach his attackers a valuable lesson.

Stone, who was diagnosed with Asperger’s syndrome and ADHD when he was 3 years old, has struggled to find longtime friends. He “can appear rude, impatient, ‘weird,’ detached, or uninterested, but this is not intentional,” his mom, Cortnie Stone, wrote on Facebook. After his alleged attack, Gavin Stone suffered a mild concussion, bruised esophagus, fractured nose and black eye.

 

We found out that Gavin had Asperger’s & ADHD when he was 3 yrs old, and growing up, we’ve had as many wonderful times…

Posted by Cortnie Stone on Tuesday, June 30, 2015

 

 

The teenager did not press charges — he instead requested his attackers’ “community service be disability related, that they write a paper on Asperger’s, and that they watch a 20 min video statement he taped while their families were present so they could see the damage they did and hear the event from his perspective,” according to Cortnie Stone’s Facebook post.

A family friend, Susan Moffatt, shared that post (with permission), adding some of her own commentary. Moffatt’s post has been shared more than 140,000 times. “If I get through to just one person tonight that THIS IS NOT OK then I have accomplished my goal with this post,” Moffatt wrote. She added:

If you are reading this, I hope you talk to your teens, tell them about disabilities you can’t see, teach them to be tolerant of people that are different, teach them that if they continuously see someone alone that maybe it is not their choice to be alone, remind them to ask questions first and get to know one another.

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How 'Inside Out' Gave Me a Glimpse Into the Mind of My Son With Autism

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Every summer, you can count on at least one trip to a dark, cold movie theater for a kid movie, even though we spend all winter long dying to be outside in the bright, hot sun. Last week was our trip. Twenty-seven dollars later, Ryan, Emma and I were nestled in our big, sticky (gross) theater seats with our popcorn and sodas along with hundreds of other little kids. As much as I sometimes loathe a kid’s movie, I was excited to see this one. It looked unique, different and fun. Little did I know, this movie, “Inside Out,” would not only entertain me, it would allow me an opportunity that I have waited years for: a glimpse from the outside in.

Ever since we heard the A-word (autism), I’ve thought so many times, “If I could just get inside his head to see what he’s feeling” to try and understand my son, Ryan, better. Just a quick peak inside that big brain of his to know exactly what’s going on in there.

The desire has burned even stronger this summer as puberty, and the pendulum of emotions that goes with all that hormonal upheaval, has led Ryan to spend countless hours alone in his bedroom seeming to find so little joy in the things he once loved. Not knowing what’s going on inside that hormone-fueled brain of Ryan’s has led this mother to lie awake at night for countless hours worrying.

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Since Ryan has trouble expressing his emotions, unless he’s on the extreme end of joy or anger, it’s hard to know what he’s feeling. As his mom, it’s hard to know what to do and how to ensure he’s “happy.” And there it is. The word every mother lives by and lives for: “I just want him to be happy.” Sometimes it’s hard to know if he is, or what “happy” means for Ryan.

Ironically, after years of wondering what was going on inside Ryan’s head, it took Disney-Pixar approximately 102 minutes to show me that not only did I struggle to understand the emotions going on inside my beautiful boy’s mind, he might struggle to make sense of them, too. Thanks to “Inside Out,” Ryan finally got to “see” Joy, Sadness, Anger, Disgust and Fear and how all those emotions make you feel. Thanks to Disney-Pixar, these emotions were finally explained in a way Ryan understood, quite possibly for the first time. And this mom got to get a glimpse from the outside in and what I saw made me recognize just how hard it’s been for Ryan to understand all those emotions running around in his head.

As I sat surrounded by hundreds of children crunching popcorn, slurping soda and giggling at the antics of emotions running around inside the main character, Riley’s, head, I heard none of it. As the theater screen illuminated with Pixar’s brilliant colors and the occasional light of a cell phone breaking through the darkness, I saw none of that. What I heard instead was Ryan’s giggles, his tears and his sniffing as the emotions in Riley’s brain impacted the emotions in Ryan’s brain. What I saw was something beautiful, something I’d spent countless hours trying to see and something I paid multiple therapists to help Ryan find. In that darkened movie theatre, with the glow of the screen on his face, I saw recognition, understanding and that lightbulb moment when it all comes together.

The movie showed the struggle with emotions that goes on inside all of our heads, and how sometimes even though we know what we feel, we’re unable to share those feelings. Whether it’s Joy, Sadness, Anger, Fear or Disgust taking over the controls inside our head, sometimes it’s hard to let others know which emotion is running the show. 

“Inside Out” also showed Ryan that finding Joy can be difficult as we get older because the things that once gave us joy as kids might not anymore. Ryan has tried to tell me repeatedly he is “done with swimming” and that “swimming in no longer part of his life,” yet he can’t explain why. As I watched Riley’s childhood imaginary friend, Bing Bong, disappear into the rubble of childhood, I saw our swimming pool go with him. I have no doubt Ryan understood that when it comes to how he feels, and how his childhood Joy is replaced sometimes by Sadness, Anger, Fear and Disgust, that he’s not so different than other kids.

Like so many moms sitting in the theater that day, I recognized I’m not so different than most moms either. We all want our kids to be happy, and we want nothing more than to protect them from sadness. I learned from Pixar cartoon characters that all kids have to experience sadness from time to time to help them find joy. Like many kids, Ryan may not be able to express what he’s feeling and sometimes that’s because of the A-word, and sometimes it’s because understanding our emotions, autism or no autism, is just hard.

Of all the Disney moments I’ve shared with my kids over the past 17 years, last week was the most valuable moment of all. When Ryan’s lightbulb went on, so did mine. As I watched it all come together for him, it came together for me, too. As much as I want to be on the inside trying to understand how he feels and making sure he is happy, what matters most is that he understands, that he gets it, and that he knows it’s okay to feel Sadness, Anger, Fear and Disgust when Joy occasionally gets lost.

Regardless of who’s at the controls of Ryan’s emotions, he needs to be the one to figure it out on the inside. Even if he can’t say it, he’s the one who must feel it, understand it and process it. And even though sometimes it kills me to be on the outside, unable to look from the inside out, that is where I need to be, ready to help Ryan embrace whoever is at the controls and do what I can to help him find joy, in his time, in his way… not mine.

Follow this family’s journey on The AWEnesty of Autism.

The Mighty is asking its readers the following: Describe a time you saw your disability, illness and/or disease through the eyes of someone else. 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 “Share Your Story” page for more about our submission guidelines.

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How to Join the Autism Video Challenge

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If you could reach a million people with one message about autism, what would you say?

If you or a loved one is affected by autism, we want to hear your response to this question — in video form! Here ‘s a summary of our video on tips for filming your response:

  • When using a cellphone, hold it horizontally with two hands. Don’t hold it vertically or with one hand.

Hand Position

  • If using a video camera, be sure it is on a tripod or held by another person with both hands.

  • Try to answer the question in 5 – 15 seconds.

  • Use plenty of natural light. If inside, have your face towards the window. You don’t want the sun or a window behind you — it creates a silhouette and we won’t be able to see you!

StandingPosition

  • Record in a quiet place.

  • Speak clearly & concisely. Be sure your hand is not over the microphone. Play through the video before submitting to make sure you can hear yourself.

Please submit your video to video@themighty.com by Wed. Sept 9​. For parents of nonverbal children, you can help them share their message in whatever format works best. Please note: Every clip cannot be included in what is published. However, every response will be used internally, to help make our approach to autism coverage as informed & supportive as it can be.

 

 

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Teenage Stand-Up Comedian on the Autism Spectrum Has Us In Stitches

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Leo Lytel is a 16-year-old stand-up comedian.

Leo, who lives in Washington, D.C., was diagnosed with autism at age 2, Syracuse.com reported. His diagnosis was later redefined as Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS).

Now, the star-on-the-rise, who has been performing comedy since he was 13, has made a splash during his first appearance on the NBC show “America’s Got Talent.” His comedy routine centers around being a self-proclaimed “awkward high school student.” He got the judges and the audience laughing and now he’s been voted through to the next round.

Check out Leo’s hilarious routine in the video below: 

For more on Leo’s story, visit his website.

 

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