4 Tips on How to Respond When I Disclose My Son Is on the Spectrum

There have been a lot of things written about what not to say to a parent of a child on the autism spectrum. Do a Google search and a lot of guidance comes up.

One of my favorites was written about two years ago by a blogger named Lexi Magnusson. She listed six things not to say to the parent of a child with autism, which includes not only why these things should not be said, but also offers suggestions of what could be said instead.

When we disclose our son is on the autism spectrum, I usually hear the phrases mentioned at numbers 2 and 5 on Lexi’s list: “He’ll probably grow out of it,” “God knew you could handle this!” and “Special kids for special parents.”

We’ve also heard, “I’m sorry,” which is really not applicable because there is nothing to feel sorry about. We don’t feel bad about it. Our son’s diagnosis was a watershed moment. It helped us get him the services and support he needed, which made a huge difference.

“You can’t tell” is another phrase people tell us. While it doesn’t bother me, I think it says a lot about the general lack of awareness in society about all of the variations of autism.

A comment that does bother me: “You’re lucky it isn’t worse.” It upsets me about what it suggests about those who might have it “worse.” Our son’s autism is what it is. We don’t need the magic of luck as consolation or confirmation of anything.

So how should people respond when I tell you? Here are my tips:

1. Don’t get hung up on the word autism.

As soon as you hear the word autism, you may start going through your brain’s database for a definition so you know how to respond. The movie “Rain Man” might come to mind, or maybe some other well-known autism characteristics that you might not be seeing in my child.

Then you might feel lost because you don’t have any ingrained social guidance on how to respond. And so you say one of those things you shouldn’t say because you don’t know what else to do.

Just let it go. Autism is so complex and so varied that unless you’re an expert, no one can expect you to be able to recognize all the facets.

Simply take my word for it. Don’t feel like you need to do anything and listen to the rest of what I am saying.

2. Pay attention to context.

There’s a reason I have told you about his autism diagnosis, and I guarantee it’s not to elicit your sympathy.

It might be because I want you to understand why my son may act differently in certain situations. I may be trying to explain why my family might do things differently than expected. It might be because we need your help with something.

3. Listen to what I’m saying.

Chances are good that an appropriate, on-target response will be obvious if you really listen to what I’m saying.

4. “Thank you for telling me.”

If you still can’t think of something to say, remember I have chosen to disclose private information to you. You can acknowledge that confidence with a simple thank you.

Follow this journey on Autism Mom.

Lead photo source: Thinkstock Images


Kelvin Moon Loh Makes Passionate Post After Child With Autism 'Disrupts' Show

On Wednesday, September 23, Kelvin Moon Loh left work feeling upset.

Loh is an actor in Rodgers and Hammerstien’s “The King And I” at Lincoln Center Theater in New York City. During the second act of Wednesday’s matinee performance, a child with autism could be heard yelping in the audience, Loh said on his Facebook page.

headshot of Kelvin Moon Loh
Kelvin Moon Loh

As the noises grew louder, so did the audience’s impatience with the child and the mother’s inability to control him. People began to get agitated and cry out at the woman and her child. This deeply offended Loh.

I ask you — when did we as theater people, performers and audience members become so concerned with our own experience that we lose compassion for others?” Loh wrote on his Facebook page. “This is wrong. Plainly wrong. What [they] didn’t see was a mother desperately trying to do just that. But her son was not compliant. What they didn’t see was a mother desperately pleading with her child as he gripped the railing refusing [and] yelping more out of defiance. I could not look away. I wanted to scream and stop the show and say, ‘Everyone relax. She is trying. Can you not see that she is trying?’”

Loh’s thoughtful post goes on to make the point that theater is to be enjoyed by everyone, not just those who can sit through it quietly.

I believe like Joseph Papp that theater is created for all people,” Loh wrote. “I stand by that and also for once, I am in a show that is completely family friendly. ‘The King and I’ on Broadway is just that– family friendly, and that means entire families, with disabilities or not. A night at the theater is special on any night you get to go. And no, I don’t care how much you spent on the tickets.”

Loh felt compelled to write about the experience after the show had ended.

“I just had a gut reaction to write something,” Loh told The Mighty in an email. “I thought there was such an injustice against this mom —  I was crying during the curtain call for her when I saw her seats were empty.  I don’t pray often enough, but perhaps this was a prayer sent out into the universe hoping that she would read it and know that she did nothing wrong by bringing her child to the theater. She was doing everything right by doing her best. That is all I ever hope to do — my best.”

Kelvin Moon Loh smiling
Kelvin Moon Loh

Loh’s experience working with a child with autism in a previous job as a teacher in an after school program has made him extra sensitive to the importance of inclusion, he told The Mighty. During his time at that job he became close with a student with autism who expressed interest in learning to be the spotlight operator for the school’s theater productions. Loh encouraged and taught him, and the student became the best light tech in the school. Loh has stayed close with the boy and his family and will see them this upcoming weekend when they attend Loh’s show.

“I never expected this attention from this Facebook post,” Loh told The Mighty. “I just wrote from my heart what I thought was right. If you feel there is an injustice in the world, I urge you to speak up. Write about it, talk to even one person. Give voice to those who at times may find themselves voiceless. This is our responsibility to one another.”

See the entire post below:

I am angry and sad. Just got off stage from today’s matinee and yes, something happened. Someone brought their…

Posted by Kelvin Moon Loh on Wednesday, September 23, 2015





“The fact that hundreds of people gather in the dark to watch people perform on stage is it’s own social phenomenon,” Loh told The Mighty. “And we do that so that we can better understand our own humanity. That is why I love theater and also why I believe everyone should experience theater. It is our job to make it accessible to all.”

h/t Seriously Not Boring

To the Man in the Barbershop Who Called My Autistic Son a 'Sissy'

“Don’t you dare call my autistic son a ‘sissy!’”

These are the words I wish I’d uttered on that particular day. It was a sunny, beautiful Saturday afternoon — made even more beautiful by the fact that it was my youngest child’s birthday. Five years old! We had plans for a fun-filled day that was going to be spent doing things he enjoyed, and I was so excited. Maybe more excited than he was!

My brother-in-law planned to give the birthday boy a haircut, but I ended up having to take him to a barbershop instead. I was disappointed because he does a great job cutting my son’s hair. His approach is gentle, slow and explanatory, and he’s willing to let my son take breaks if needed. It’s difficult to find people who are similarly accommodating, especially on short notice. So I called the barbershop I use for my older boys, explained the situation, made an appointment to arrive within the hour and hoped for the best.

En route to the barbershop I explained to my son what was happening so he could be prepared, and I asked him what I could do to make him feel more at ease when it was his turn. When we got there, I was ushered over to a barber. I said I was the one the owner told him about, and I introduced him to my son. I explained I would sit on the chair and my son would sit in my lap for the duration of the haircut because he wasn’t comfortable sitting on the chair alone. I also explained the following:

  • The apron used to protect clothing from falling hair not be fastened too tightly around my son’s neck.
  • My son requested I sing songs from various Disney Junior shows during the haircut to help keep him calm.
  • My son would need to inspect and “test” the electric razor against his hands before allowing the cutting to begin.
  • Only I was to hold my son’s ears down when we got to the part of the haircut requiring that, not the barber.
  • Throughout the haircut, my son needed the barber to explain what was going on and to pre-announce any changes, like the need to pause and switch to a different razor.
  • If it got to be too much we might need to stop, even if the haircut wan’t “perfect,” just as long as it still looked decent.
  • Regardless of all of these precautions, my son would probably still cry.

He listened and told me he was fine with all of that. I said a quick prayer, and then we took our seats and got started.

It’s important to me that I always respect my children’s privacy, so I won’t go into specific detail about how my son reacted during the actual haircut. I don’t believe in “live tweeting” or otherwise describing for others the difficult moments my children face and what they might do/say when they’re having a hard time and are not at their best. Let’s just say it wasn’t the best experience of his birthday. Let’s just say it totally sucked. And if not for the fact that he was really overdue for a haircut, I would have preferred that he not even have to go through it.

But my son’s reaction is far from the worst part of this story. That would instead be a person who was waiting there to get his own hair cut. I don’t know the name of this male presenting person, and I have never seen him before (and I hope to never see him again). Let’s just call him Mr. Ableist Sexist Jerk, or Mr. ASJ for short.

Mr. ASJ took it upon himself to bully a little child. A child who was clearly in agony. A child he did not know and had no right to address in such a way. A child many decades younger than he, and a child with a disability who was not in a position to defend himself.

I’ll just give you the highlights of some of the “lovely” comments Mr. ASJ felt the need to hurl at my 5-year-old child.

“Hey, you need to stop all that crying. That’s too much crying. Nobody wants to hear all that.”

“Are you a little boy? I don’t think so. Maybe you’re a little girl. Because a boy wouldn’t be crying like that. I think you must be a girl, huh?”

“Stop acting like a sissy. Only sissies cry for no reason. Haircuts don’t hurt.”

I didn’t realize what he was saying nor that he was addressing my child; not at first. My concentration was primarily on my child and trying to keep him comfortable. Then the barber cutting my son’s hair stopped what he was doing, stood up tall and said, “Man, you need to quit hollerin’ at a child like that. This boy isn’t bothering you so you need to leave him alone. He’s a boy with autism so you don’t know if it’s hurting him or not. He’s my customer and you need to show my customer some damn respect in here.” To which Mr. ASJ said,

“That boy doesn’t have autism. I heard him talking. He’s just a mama’s boy.”

That’s when it dawned on me that the tirade, which I had ignored, had been directed at my baby boy. And that though I hadn’t been paying attention, the barber had heard it all, gotten upset and was speaking up to defend my son.

I am generally a nice person. I consider myself pretty tolerant and I give people a “long leash.” But when I get mad, I get mad. There is some truth to the phrase, “Hell hath no fury like that of a woman scorned.” And then to add insult to injury you are messing with my child?! Oh heck no. I could feel the anger rising up in me as I prepared a retort in defense of my child. It was about to be on.

And just then my son’s tears, which had subsided for a short while, resumed. Louder and with more fervor. In that moment I abandoned my plan to give Mr. ASJ a piece of my mind and turned my attention back to my son. I began singing to him again and slightly rocking him the way he likes, and telling him I was proud of him, I loved him and that he was doing a great job. I told him we could stop the haircut any time he liked. The barber joined in with me, telling my son, “You’re such a good boy! You look sharp too! Wait till you see your haircut. Almost done now.”

I sincerely doubt Mr. ASJ will read this, but in case he does, this is what I wish to say to him:

I’m the mother of the autistic little boy you were bullying on Saturday. I want to thank you for being a living example of everything I’m teaching my son not to be.

Like the barber told you, my son is autistic. Just because he can “talk” doesn’t mean he isn’t autistic. He has a disability, and he was crying because haircuts are difficult for him. Instead of you being sensitive to him like every other person in the shop was, you made it worse. I’ll have you know that calling my child a “mama’s boy” isn’t the insult you meant it to be. I am his mama, and I’m proud to have my boy’s back all day every day. I’m raising him to be a strong black man.

A real man wouldn’t yell at a child. He would comfort him. A real man knows there’s nothing wrong with crying. He knows there’s nothing wrong with being a “little girl” and doesn’t think that calling someone a “girl” is some type of slur.

You know what else a real man knows? He knows that to call an autistic boy a sissy is the height of disrespect. It’s rude (and homophobic, for that matter) to call any boy a “sissy.”

There’s nothing shameful or wrong with a child expressing their feelings nor with a mother comforting her child. I’m raising my son to know that when he’s hurt or scared, I’m there for him. I’m not ashamed of being that type of parent, and I won’t let you make my son ashamed of it.

Follow this journey on Just Being Me…Who Needs “Normalcy” Anyway?

Lead photo source: Thinkstock Images

What You Don’t See When You Misjudge My Son’s Sensory Overload

I see your stares and sometimes dirty looks. I hear the comments and the whispers when my son covers his ears and screams as the intercom comes on in the grocery store. Or when he falls to the ground and whines when we walk outside on a sunny day. I’m sure you’ll write it off as bad behavior, bad parenting or both.

I recount the times we attempted haircuts in public salons, and you were there sneering at his screams and tears.

I hear you, the perfect mom, disapproving of his lunch and its lack of healthy choices. I’m sure you see a lazy parent who just gives in to her kid’s demands.

And you, friend, when I apologize for our absence from a party, I know you don’t understand and we seem antisocial. And on the few occasions we go to a social event and there’s a baby crying in the room, as my son screams out and begins crying himself, I see the annoyance in your eyes. And you’re annoyed because you see a kid that simply wants attention. If only it were that simple.

You don’t see the hours upon hours of therapy he’s experienced so he can tolerate going into a grocery store. He may have to cover his ears, he may have his moments, but he is working hard in that moment to hold it all together. And how I wish you’d realize an understanding smile in that moment would make all the difference.

You don’t see the panic and anxiety in his eyes when we talk about a haircut. You don’t see the many therapy sessions that involved simply tolerating being in the room with a set of clippers going.  You don’t hear the pain in his cries when the hair or water touches him.  You don’t know that we prepare for weeks leading up to a haircut. And now with an understanding stylist, who is willing to take lots of breaks and help talk him through it and avoids clippers altogether, haircuts are still hard, but they’re so much better than they once were.

While you may see an unhealthy lunch, you don’t see the months of therapy it took for him to accept eating that apple. Yes, it’s the only fruit or vegetable he will eat, but we’re moving forward. You haven’t seen him gag, cry or flip a table when presented with a new food. It’s not a matter of appeasing a picky eater; it’s a battle with his senses, it’s anxiety about the unknown and it’s hard for him. When family, friends and teachers accept that our food choices are a work in progress, when they take the pressure off because they realize how hard we’re working to eat healthier, this mama breathes a sigh of relief.

When a loud, chaotic social event is over, you don’t see the meltdown. You don’t see him rocking and crying and singing for hours as he tries to bring himself down from the sensory overload he’s experienced. So forgive me, there are times when we just avoid the party all together. But that doesn’t mean we don’t wish we could be there or that he doesn’t enjoy playing with friends. So please keep trying, and if it’s a smaller gathering and I think he can handle it, we will try. But understand and don’t be offended if there are times when we can’t.

Imagine hearing too much, seeing too much and feeling too much every time you walked into a room. That is life with sensory processing disorder, and there are times when it’s just too much.

You can always choose to see what you want to see. These are hard conversations to have because they set him apart, but now you know. And now that you know, perhaps you can see things differently.

boy next to tree
Mandy’s son smiling in front of a tree

Follow this journey on From the Bowels of Motherhood.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, 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 Share Your Story page for more about our submission guidelines.

"If I Could Tell the World One Message About Autism It'd Be..."

We asked our Mighty community a big question, “If you could reach a million people with one message about autism, what would you say?

These are their incredible responses:

To the Person Who Doesn't Get Why My Son Won't Eat the Food You Made

To the Person Who Doesn’t Take My Son’s Sensory Issues Seriously,

Yeah, he’s a picky eater. Yeah, his diet isn’t great. Yeah, he knows Cinnamon Toast Crunch Cereal is not a food group. And yeah, even though he’s hungry, he’s still not going to eat your (insert anything here that is not Cinnamon Toast Crunch Cereal, Vanilla Oreos, Velveeta Shells & Cheese, pizza, apples or Pringles). It’s not because he’s “spoiled.” It’s not because we “give in to him.” It’s not because we “always let him win.” And it’s not because your mac and cheese sucks — it’s because he has sensory processing difficulties and he is not going to eat it… not today, not tomorrow, not next Thursday. It’s not about me, and it’s not about you. It’s about him.

Although you may think, “He will eat it when he gets hungry enough,” chances are, he won’t. And as a mother who understands him, advocates for him and loves him, I’m never going to test your theory. Would you be willing to try “just a bite” of some rotting food out of a dumpster on a hot summer day? Because, no offense, but that’s exactly what your mac and cheese might smell and taste like to him.

These sensory sensitivities come as a result of his autism, not as a result of poor parenting or because he is a “stubborn, strong-willed child.” His sensory system is on heightened alert because his brain processes his sense of smell, taste, sight and touch differently than you and I do, so him not eating your mac and cheese is not meant to offend you, it’s meant to protect him. Eating what he is used to, what he knows he likes, makes him feel safe. Even though your mac and cheese may be award-winning, to my son it’s an unpredictable threat.

When he was little, he would yell, “no, no, no” when an undesirable, new, threatening food was placed before him. Now that he is older, he is better able to explain how threatening your mac and cheese is to his sensory system. “My brain and my body will not let that food go in my mouth.” It doesn’t matter if it’s a stinky, hard-boiled egg, a delicious-smelling, warm and gooey brownie, or your mac and cheese — his brain and his body say “no,” and I respect that because I respect him. I just wish you would.

If perhaps you would read some of the articles, blog posts and books I’ve suggested to you so you can try to understand him and his sensory system better, maybe you would spend less time fighting him and more time relating to him. You might see how far he’s come and not how far you believe he still has to go. You may see him and not your untouched mac and cheese.

The next time we come to visit, consider serving Velveeta Shells & Cheese instead — not because you’re “giving in,” “spoiling him” or “always letting him win,” but because you love him, respect him and are trying to understand him and his sensory sensitivities. By taking the time to learn about this amazing person you love, you will be more aware, accepting and understanding. Perhaps then, you will finally see him, and not what is or isn’t on his plate.


Ryan’s Mom

Kathy's son draining cooked pasta in the sink

Follow this journey on The AWEnesty of Autism.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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