Mom Owes It to Her Son to Tell the World He Has Autism

Mom Moment 32

autism It's becoming a bigger and bigger issue: how does society bend to work with kids with autism? With the number of kids on the spectrum growing every year, it's high time society get on board with accommodating them, right? Of course, but now we've got a problem. What happens when parents decide they're going to hide their child's autism from society?

Then what? How does society get on board? And why would a mom even want to hide it?

According to one mother who shared her story on the CafeMom boards recently (she chose to remain anonymous), only her best friend and sister know that her son has autism. As for everyone else:

I don't feel the need to and I don't like him to be treated differently or pitied.

It's hard to argue with that, especially as a mom of a neurotypical child. I wouldn't want my daughter to be treated differently from other kids, and I certainly don't want her to be pitied for who she is. I can't imagine how much harder it must be for parents of kids on the spectrum.

But as tempting as this mom's decision might be, she's doing a real disservice to her child.

Why? Let's consider the strides being made toward autism awareness in America. Just this past weekend writer and mom of a son with autism Amy Fisher Lutz weighed in on the debate over how to share public spaces with people on the spectrum.

"Ideally, our public spaces should accommodate everyone," Fisher Lutz said. That means no one should expect her son, Jonah, to stay home simply because he doesn't act "normal" in public, but she also bears a responsibility to try to take him to movies that aren't as crowded or to more family-friendly venues.

But Fisher Lutz made a point to note incredible kindnesses that have made her family's lives easier from people who have gotten on board.

Is that treating them differently? Perhaps. But it's also a sign of increased understanding that having autism does make kids different. Not bad. Just different. 

Different is OK! But different does come with needs. It means kids who are on the spectrum, or heck, kids with any special need, require, well, different treatment sometimes. And unless people know to provide said treatment, they can't be expected to step up.

Here, let me give you a real life example. A father I know volunteered to coach his daughter's soccer team. The kids on the team were all randomly assigned, so he didn't know many of them or their parents. One little girl showed up on the first day of practice, and he could tell she was different, but the sign-up form didn't indicate any special need, nor did her parents provide him with any background.

More From The Stir: What It's Like to Raise a Kid With Autism -- When You're Autistic Too

He decided he'd treat her just like the other kids and sent her out on the field to practice. But unlike the other kids, she became winded within minutes, her face beet red. He noted other issues as the season progressed, many of them cognitive, but the parents never approached, and because they'd drop her off at practice and leave immediately, he wasn't able to approach them.

It was only through word of mouth in the community that he was able to ascertain her various health and mental issues.

Those parents put him in a rough position. Perhaps they wanted their little girl treated "normally," but at what cost?

The coach lamented to me once that he would have liked some more information simply so he could better meet her needs. He wanted to do better for the child, but he wasn't armed with the information to do so.

Did he do the best he could? Absolutely. But he worried that it wasn't enough.

This is the risk in hiding a child's autism.

You don't allow people who will work with your kid to do so. You sell society short.

And frankly, you sell your own child short. Kids with autism need to hear from their parents that it's OK to be different, not that it's something that needs to be hidden.

I don't pretend to know what it's like to parent a kid on the spectrum, but I am a mom. And I want my daughter to embrace everything about herself -- different or not. That's her right as a human being, and that same right extends to kids with autism.

Would you hide your child's autism from the world?

 

Image via BLW Photography/Flickr

autism, special needs

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nonmember avatar Meg

My best friends 13 year old son has autism. I'm pretty sure only his parents and a very select few know. The child only had very slight autistic symptoms and his mother does not was her child to know he is autistic. She doesn't want the kid to have a label because she is afraid that autism would be only what people see. She doesn't tell the child because she doesn't want the child to have an excuse not to be all he can be.

nonmember avatar lisakharris

"especially as the parent of a neurotypical child." lololol. Is "normal" not PC anymore?

Vegeta Vegeta

Although nobody really knew about it when my brother and I were growing up, we still made out fine (were definitely different and 'weird' but fine none the less). I don't think the world needs to 'adapt' to anything, even my more severely autistic friends function without calling foul on every little obstacle. If you need special things, adapt your own person, instead of expect the world to change just for you. Example: If you need a wheelchair, get one, don't expect people to carry you everywhere. The only time I ever used autism as an excuse was in a college class and asked if it would be ok to do extra work to compensate (to display that I was trying, not just using a handicap to get out of things) I don't see the need to have neon signs pointing at me saying that I have autism, I'm not a crazy advocate, and I don't think I should be treated special or differently unless I'm a war veteran or something.

nonmember avatar Rory Gilmore

Moms of kids on the spectrum owe it to their kids to advocate when necessary and step aside when the child is able to self advocate. My family and close friends know about my kids being on the spectrum, and when they get to be school aged, their school will know, as well. But as far as telling anyone else? That's entirely up to my kids, when they are able to do so. That's not cause I'm ashamed, but because I don't know how they want to approach it. It's not my story to tell. It's theirs.

No disrespect to Ms. Sager, but there are plenty of autistic adults who would love to have a platform as large as the stir to explain what it is really like to be autistic, and what is best for them. Perhaps you could step aside on this topic and have an autistic blogger write on this topic? I would trust one who is actually living it to be able to better explain what is best for those on the spectrum.

merma... mermaid13dragon

I taught at a camp last year. One of the students kept acting out and disrupting the class to excess. It turned out he was on the spectrum and it would have been helpful to know ahead of time!

nonmember avatar Dawn

That is a trick question. The child runs the risk of being labeled either way. Either as a special needs kid or as a problem child. It is hard to decide what the right thing to do is. My nephew is autistic and his mother will tell his teacher or the school, but mostly will leave that information to herself for other areas. It really depends on the child's comfort zones.

Karma... KarmaGrant

And who are you, the writer, to say she has to tell anyone a thing about her child that she doesn't want to?! What happened to respecting privacy? Just because a great many moms and dads do tell the world doesn't mean every single parent must. I want her and any other parent to do what they feel is best for THEIR child, not what the media says is best.

Elizabeth Ann Garrison

My sonhas Autism, we are still working with evaluators and such to determine where on the spectrum is. I don't parade the fact that he has autism, it isn't tattooed on his or mine's foreheads but when he is shutting down, I will explain to others around us what's going on. An example, he was at the pediatrician's office for x-rays and was freaking out about the machines. The technician was trying to talk to him and calm him down. I pulled her aside and I said, "I'm sorry that he's giving a hard time. He has autism so he's easily overwhelmed." She immediately turned the lights down and turned some of the machines off so the buzzing sound quit and he calmed immediately. If I hadn't spoken up, he could have a horrible experience. While I don't want him or society to use his autism as a reason for him get away with any behavior and to not expect 100% from him, I do want people around him to be aware of the fact that he has it and may always need a quiet, dark, room to go to calm down and he may always fidget and flick his fingers. It's a hard balance.

nonmember avatar Sauny

Yes, lisakarris "normal" is very un-PC and insulting to people on the spectrum.

nonmember avatar S

It depends on who it is. School and child are providers need to know if a child is on the spectrum, but random people at the grocery store do not need an explanation.

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