*I decided to write this letter after reading a comment written by a self-identified autistic adult advocate. According to the comment that she left on the forum, her mission is to educate, but lately she feels like giving up because so many people attack her words rather than taking her message to heart. I want to her to know that, as a parent of an autistic child, I hear her and I appreciate her words and insight. Now, more than ever, the autistic perspective is needed.

Dear Autistic Adult*,

We have never met before in person, but I want to thank you.

First, allow me to introduce myself.

I am a mom of an amazing seven-year-old named Ben. I’ve changed his name to protect his right to privacy.

Ben is autistic. I am not.

When Ben was first received his autism diagnosis, I became shamefully aware of how little I really understood about autism. I was a novice in the world of disability, but I quickly dove into researching anything I could find on the subject. I quickly realized that there is a lot of conflicting information out there. For a short while, I let the so-called experts scare me with their doom and gloom prognosis. During that time, I allowed myself to give in to worry and doubts about my child’s future.

Somewhere early into my journey, I discovered you. I came across your blog. I read your comment in an autism forum. I met you through a Facebook page devoted to autism acceptance.

Even though it was hard to hear, I listened to your words.

I realized that, even if you and my son come from different points on the autism spectrum, you understand his neurology in a way that I never can or will. You have lived his journey and are speaking from a place of experience. You are the true expert — more than any doctor with a PhD ever can be.

I listened and realized how much I still needed to learn.

I realized my perspective was off.

I realized I was busy feeling sorry for myself, but it wasn’t about me at all.

This was about him.

I listened and began seeing my son’s autism in a brand new light.

You taught me that autism is not a disease and therefore does not need a cure.

You taught me to steer clear of those promising cures and to be wary of organizations without any autistic representation on their governing boards. You taught me to love the child I have rather than mourning the loss of the child I had expected him to be. Read Jim Sinclair’s eloquent post called “Don’t Mourn for Us” here.

You taught me that his autism permeates every aspect of who he is. It is as much a part of him as his gender or his eye color. You cannot separate autism from the person — nor would you want to, because even though autism brings its challenges, it also brings amazing strengths. And all of us have challenges, whether we are autistic or not.

You taught me about ableism and inspiration porn and the dangers of therapies that seek to make a child indistinguishable from his peers. I learned about the insidious nature of quiet hands.

You taught me that no one “grows out” of their autism and the price the body pays when it tries to “pass” as normal for too long.

You taught… and I learned.

I learned about identity-first language versus person-first language and why most prefer the term “autistic” to “person with autism.” I changed the way I used those words and explained my reasons to my colleagues when they asked why.

I’ve learned to ask for consent when writing about my son’s experiences. I’ve realized they are his stories to tell more so than my own. My son is not an object to serve as a teachable moment, an inspiration or something to pity. He is a child who will someday grow into an adult. I have to respect his privacy first and foremost.

I believe that, for too long, parents like me have controlled the narrative about autism, and the autistic perspective was missing entirely. I hope this continues to change.

I know it hasn’t been easy for you to share your perspective. I know that parents have said harsh and hurtful things to you. I’ve seen so many online forums become battlegrounds rather than safe spaces. I know it must be tiring to seek to educate — to explain the same message over and over — as you meet new parents who don’t “get it,” as I once didn’t. Sadly, I do not see an end to the great divide in our community any time soon.

But I’m here to tell you that it is worth it.

Because, by educating me, you are making me a better parent for my child.

You are making me a better teacher for the children I educate.

You are making me a better writer, advocate, and human.

There is so much work to do.

Please don’t give up just because the divide seems insurmountable.

Please know there are other parents like me who are quietly listening and learning.

You have the power to change perspective.

Because, though I may not share your neurology, I share your mission.

I share your desire for respect and equal access to education, employment and opportunity.

No exceptions.

Respectfully Yours,

Ben’s Mom

Follow this journey on Changed For Good.


Zaivier Hensley doesn’t like to stare directly at cameras because of the flashing lights.

So when the 5-year-old, who has autism, met Santa at the Fox Run Mall in Newington, New Hampshire, on Dec. 6, the pair came up with a clever way to take a photo:


This Santa was part of Fox Run’s “Caring Santa” program, where a sensory-friendly environment is offered to any child who prefers one.

“For once we were not the people being stared at or whispered about. We weren’t being accused of ‘disrupting’ anyone else’s experience or told we should just go home and forget about it by the ever-present people with unwanted and less-than-helpful advice,” Zaivier’s mom, Catherine O’Meara, told The Mighty in an email. “We got to be ourselves in a place where no one batted an eyelash when we had to walk exactly seven laps around the village before we could go see Santa. It was OK that Zaivier was vocally stimming, jumping and spinning to calm himself while we waited for his turn. And it was OK that he needed extra time to warm up before he gained the courage to even come within arms length of this man.”

“It’s a little slice of the one holiday experience we ever had where the two of us were just enjoying a nice tradition,” O’Meara added. “We didn’t have to qualify why we went, or why it was important. We just had to enjoy ourselves.”

I met Denial 10 years ago. When she first came into my life, I had no idea the impact she would have on me. Denial was the friend I clung to the most. The friend I counted on to get me through some tough days. The friend who was always there when I needed her… and even some days when I didn’t. Denial was the friend who plopped down at my kitchen table, slept off her wine buzz in my spare bedroom and took up residence inside my head. And she never even brought wine. Pfft.

6893394 Denial also helped me block out things in my past that were tough to look back on. Things I choose not to remember because, well, Denial suggested I shouldn’t focus on “those” moments. And I listened to her. Denial is a tough cookie.

For many of us who had “The A Word” sort of whispered across an expert’s desk, Denial is a friend we spent at least a little time with, sometimes before we heard the word and sometimes even after. Denial is the friend who stays too long, talks too much, spouts her opinions way too often and is a horrible influence on you. In short, Denial is the friend your mother always warned you about. And just like when you ignored your mom’s advice on that “no good blankety-blank-blank boyfriend,” chances are, you ignored her about Denial too. And just like with your “no good” boyfriend, you eventually had to figure it out on your own, in your own time and in your own way… only this time without matching tattoos.

Denial is the friend who usually shows up right after Fear leaves. So, just when Fear closes the door and you finally think you’re alone, you’re reminded that you’re not. Fear and Denial are the friends you no longer really hang out with, but, you know they showed up in your life for a reason…. and a season… or two… or 10. And rather than beating yourself up for your poor friend choices (just like you do for that old boyfriend and that tattoo), you have to remember you chose them, just as much as they chose you. And that’s OK because you’ve since moved on, and thanks to them, your eyes and your heart are now open.

I’ve decided I can continue to beat myself up for running with the wrong crowd for so long, or I can laugh at the impact that crowd had on me and how much I’ve grown since then. Like with most things, I choose to laugh because laughter really is the best medicine, along with a good bottle of red wine that a real friend brings over when she stops to visit.

Here are 12 ways I know Denial showed up and stayed too long:

1. Back when my son Ryan’s sensory system was on such heightened alert, Denial told me when I was blow drying my hair, it wasn’t the sound of the hair dryer that caused Ryan to run around like a wild banshee screaming, it was because he was upset I was ignoring him and focusing on my latest hair style. Made perfect sense.

2. Denial also assured me Ryan’s lack of eye contact, especially when he looked out the corner of his eyes, was not because making eye contact was difficult for people with autism, it was because he was too busy looking at things much more interesting than his boring, old, nagging mom who constantly said, “Look at Mommy, Ryan.”

3. When Denial stopped by and I would tell her how sad I was that Ryan didn’t have friends, she assured me it wasn’t because Ryan struggled to make friends, it was because he hadn’t found any friends worth his effort. That was so much less painful to believe.

4. Denial also led me to believe when Ryan would spin and spin and spin under the ceiling light in our kitchen, it wasn’t because he was trying to self regulate, it was because he was spinning to see where the screws were on the light fixture so I could change the lightbulb (even if the lightbulb did not need changed).

5. The screaming, crying, meltdown at every single haircut was because Ryan wanted to keep his hair long and every time I walked him into the hair salon, I was betraying his wishes, Denial assured me. She poo-pooed my concern that the tears and the screams for help could be a sensory issue and perhaps a red flag for (whisper) The A Word. He does prefer his hair long, so Denial may have been onto something.

6. When Ryan would cry, “No Miss Joanie’s class, no, no, no!” every time we pulled into his Music for Children Class, it wasn’t because the banging and clanging of drums, tiny cymbals and maracas by a group of 2-year-olds was too overwhelming for him; Denial assured me that with Ryan’s musical gift, his protest was because he felt they should be singing “Ava Maria,” not “Twinkle, Twinkle Little Star.” (Seriously, “Twinkle, twinkle little star, how I wonder what you are” ? It’s a star, the lyrics just told us it as a star.)

7. Denial always made me feel better when I would watch Ryan pull away from other people’s hugs or touches because she assured me it wasn’t his dislike of touch that caused him to behave that way; it was because no one gave hugs like me. I’m a good, big hugger. Seriously, I am.

8. Every time we tried something new or different and Ryan would wig out, Denial told me it was not autism or the need for things to remain the “same.” It was because the old way worked, so why mess with what works?! If it ain’t broke, don’t fix it. 

9. Denial also said new clothes, new shoes, new coats, etc. weren’t due to Ryan’s extremely sensitive sensory system; it was just because Ryan knew how much I loved new clothes, new shoes, new coats, etc., and he wanted me to spend the money on myself. Such a sweet, sweet boy. (Dang, that Denial was goooooo-ooood).

10. The reason Ryan ate the same food, day in and day out, wasn’t because he had autism; it was so I would always know what to make him and I wouldn’t ever get it wrong. Because when you did get it wrong, well, suffice it to say, even Denial would leave the kitchen before the blow up began.

11. “Stop sweating it!” Denial would shout at me when I would obsess over Ryan’s scripting of videos, movies and games. “Maybe Ryan thinks ‘Thomas the Tank Engine’s Day’ is more exciting than his own so that’s why he talks like Sir Topham Hatt and not Ryan.” Thomas did have a fascinating life on the Island of Sodor, and well, we do not live on an island.

12. “He’s fine.” 

She did have that last one right, but, for all the wrong reasons. Denial told me Ryan was “fine” because that’s what I wanted to hear, but, believing in “fine” didn’t get Ryan the services he needed. Ryan was fine… in fact, he was perfect, but he still needed support — support that as his mother I couldn’t give him, and that was the toughest thing that Denial never said. Yeah, it was time for Denial to get out of my kitchen, out of my spare room, out of my head.

I admit, it was hard telling Denial to leave, and sometimes, I would let her pop in even though I knew I shouldn’t (just like that boyfriend). Heck, sometimes she still does, but, I had to let Denial go to make way for the friend I really needed more than anyone… Acceptance.

One day, Acceptance did show up, and she helped me see all Denial kept me from seeing. Acceptance didn’t stay as long as Denial because I didn’t need her to. Once Acceptance came and said her piece, my eyes and my heart opened, and I knew I could manage on my own… once I found Ryan the supports he needed to manage on his own.

Denial was a huge part of my journey. Just like real friends come in and out of your life, regardless of how long they stay, they leave a mark that you might not be who you are today without. So, even though Denial led me astray for longer than I would have liked, I don’t think I would be on the path I am today without her, and therefore, Ryan may not be where he is today either.

I’m sure Denial quickly left here and sat down at someone else’s table and set up residence in their head. For those of you running in the same circle with Denial, I want you to know she is there for a reason, but don’t let her stay long. Your child’s future depends on you making it on this journey without Denial whispering in your ear. So, when she stops to visit, make her bring the wine and send her on her way quickly.

You got this without her. I promise you do. 

Follow this journey on The AWEnesty of Autism.

It’s the most wonderful time of the year! There are lights everywhere, people are crowding stores to find the perfect gifts for their loved ones, there are cookies to bake, family to visit and holiday cheer all around. I’m not kidding at all — I would love if we could make “Christmas season” last all year round. That being said, Christmas can also be an extremely difficult time for kids and adults with autism. There are lots of aspects of the holiday that don’t make for a very autism-friendly Christmas.

The lights, smells, crowds and all of the things that we love about Christmas can be extremely overwhelming to someone who struggles with sensory input. Even something as simple as visiting family for Christmas dinner can be overstimulating and downright painful to someone with autism. So what should we do? Hiding away from November to January isn’t really an option, and we shouldn’t take away the joy and celebration of Christmas just because it’s hard for our kids to participate like others.

This is where hosting an autism-friendly Christmas comes in! This post will be especially helpful to family members who aren’t quite sure how to help a child with autism who will be visiting them for the holiday. It can be really difficult for extended family to understand the complexities of autism. They honestly want to make the kids in their family feel comfortable and safe, but it can be hard to know how to do that practically. That’s why I decided to put together this handy little guide to an autism-friendly Christmas.

First things first: ask ahead.

This one is probably the most important suggestion in this entire post. Ask the parents, or the child if you’re able, how you can help them with the holiday. Maybe they need to arrive before everyone else to transition into the new environment before there are crowds of people there. Maybe they need you to take pictures of different areas of your home so they can explain them to their child ahead of time. The possibilities are really endless. Mothers with autistic kids will come up with the most creative ways to help their child have the best possible time. Trust me: just ask her and she’ll have a few suggestions for your autism-friendly Christmas.

Consider the food.

With my son, one of the biggest struggles of going somewhere else during the holidays is making sure there will be something he can eat. Veggies are out, and noodles, mashed potatoes are petrifying, the only acceptable meat is frozen chicken nuggets and he’s hungry all the time. That doesn’t make it easy to head to families’ houses for the holidays. We bring lots of snacks (crackers, chips, etc.) and we try to find him something from the meal he can tolerate, which is often rolls.

Now, I can’t tell you what foods will be considered “safe” for your family member with autism, so go back to point one and ask ahead! I know preparing the food is one of the most stressful parts of hosting Christmas, and we don’t want to put more of a burden on you. That said, hosting an autism-friendly Christmas could be as simple as making a peanut butter and jelly sandwich or microwaving some chicken nuggets. Trust me, your family members will appreciate the effort!

Be flexible with expectations.

We often have expectations of how the holidays will go that we don’t even stop to think about. The kids will get there and give hugs and kisses to all the grandmas and grandpas and aunties and uncles, then they’ll run off and start happily playing with their cousins. When it’s time to open presents there will be tons of excitement and joy as the kids all happily rip off the paper to see what goodies are inside.

These expectations may be way off base when you’re considering a child with autism. Letting a child with autism set the pace for certain interactions is going to mean less meltdowns and less headache for everyone. Maybe they’ll give high fives to family instead of a hug, or maybe they just need their space. Try to be OK with whatever way they show affection, or even if you can’t tell they’re showing it at all. Opening presents in a house full of excited kids can be oversimulating for everyone, let alone kids with autism. Your autism-friendly Christmas may include the child opening presents one at a time slowly over the night and not in one chaotic free-for-all.

Have a sensory retreat.

I am not suggesting that you have a full-blown sensory room prepared for your family member with autism to hide away in, though that would be awesome! But designating a space where the kid can hide away for a bit and regulate his sensory system is vital for having a happy, autism-friendly Christmas.

Maybe this simply means that you close off your bedroom so they have a quiet space to themselves when they get overwhelmed. Maybe you set up a quick sensory bin to help them calm down. Even something as simple as a comfy chair away from the chaos with a phone and some headphones can help a child with autism calm down and enjoy the holiday. Again, just ask the parents or the child what they think will help. They’ll probably even bring along a weighted blanket or some noise-canceling headphones to help out.

Explain autism to other family members (especially kids).

Autism isn’t always the easiest thing to understand. First off, it is a huge spectrum, so it’s hard to know what to expect. Maybe your family member will only struggle to make eye contact, or maybe they’re completely nonverbal. Either way, it’s still autism.

It can also be really difficult for kids to understand because kids tend to think in black and white. Often, other kids in the family will think the child with autism is being favored or is simply naughty. It’s really important to explain to kids in an age-appropriate way that their cousin’s brain works differently, so they can’t always do things the same way other kids can. Sometimes they don’t share toys, sometimes they don’t eat the same foods and sometimes they don’t answer questions. All of that is OK because we’re all different, and that’s what makes us special. Trust me, you’ll end plenty of fights by helping the other kids understand why one of them gets chicken nuggets while they have to eat their veggies!

Overall, be loving.

Having an autism-friendly Christmas can seem difficult, but the changes needed will have a small impact on the host. They will have a huge impact, however, for a child with autism and their family. We often spend half of our family holidays apologizing for one thing or another, handling meltdowns or intervening in arguments. The other half is spent trying to enjoy our holiday (and maybe grab a bite to eat) while stressing about when we will need to start apologizing, handling and intervening again. Making some small changes and putting forth a bit of effort into hosting an autism-friendly Christmas is one of the best ways to show your family that you care this year.

Let them know you love your family member with autism and want to help however you can. To me, that’s the spirit of Christmas.

Follow this journey at This Outnumbered Mama.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness during the holidays. 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.

Lead photo source: Thinkstock Images

I don’t always want to talk about difficulties. I don’t believe it’s beneficial to focus on negatives constantly. But I also believe we live in a society that attributes powerlessness and weakness to vulnerability, and I would like to dismiss that myth.

One of the biggest challenges I face as an adult on the spectrum lies within the realm of my parenting duties. Not so much the act of parenting itself so to speak, but more so living up to my children’s expectations in regards to what society says a parent is supposed to look like.

I have tried, with what I believe to be an enormous amount of effort, to instill certain beliefs in my children, one of which is that everybody is different, including parents. I think they understand to a degree, but I do believe there remains a frame outside their general understanding they have yet to reach.

The reason I say this is because in as much as I believe they truly love me as I am, I also believe sometimes my differences frighten them. I’m not talking about the kind of fear that comes with aliens or monsters. I’m talking about the kind of fear that comes with feeling alone and uncertain. I don’t think they know how to say it, but I can see it in their eyes sometimes. It’s a feeling that I am all too familiar with. The times when they should be able to believe, beyond the shadow of doubt, that they can lean on me aren’t always as simple as they should be.

Parents — as a general rule in story books, television and mainstream society — are deemed fearless. Unafraid with an infinite amount of bravery. And even during the times when they don’t have these traits, they still pretend to.

But what if a parent was afraid? What if, in addition, they were completely incapable of hiding their fear? What happens then? Well, let me tell you.

Emily Klein.3-001

My 14-year-old is an athlete. She is exceptionally talented, witty, intelligent and wise beyond her years. She is my compass in most social situations when I feel uncertain. I am eternally grateful to have been blessed with such an amazing kid. She has been playing with the same soccer team for about six years now. It is a top level that participates in many out-of-state events that require travel and frequent overnight hotel stays. It’s probably one of her favorite things about the team. She has a fancy for all things, well, fancy. I’ll add in here that this type of fancy also happens to be my least favorite part of the whole experience.

I have severe anxiety when it comes to changes in routine, leaving home, not sleeping in my bed, hotels and bugs. I have up until this point forced myself to submit to these trips. Taking down myself and everyone around me in the process between the pressure and the punishment for not being able to handle it. I have tried to make adjustments: car-pooling, sharing rooms, sending her up with teammates, canceling at the last minute and even just trekking it alone with her while putting myself in a compromised state physically and emotionally.

The reality is this the amount of anxiety traveling creates for me is overwhelming. If I can’t go and come home the same day, I can’t go. It’s as simple as that. I have accepted that this is a part of who I am. Not that I have succumb to the fears and refuse to overcome them. This is different. This is the way my brain is wired, and rather than attempt to change something biologically certain in my DNA, I have decided to work towards a more attainable goal of working around it.

This weekend we are set to play in Jersey. Initially, I booked a room and invited a friend to come along for moral support. Then I checked the reviews, which had multiple reports of, uhm, bugs. Reservations canceled. I researched other hotels but found nothing. I made the decision that we will go and come home both days. She gets to play, and I feel safe. It’s all about compromise, right?

Well, sitting across from my daughter at the dinner table as I broke the news proved to say otherwise. If I said she was pissed, it would be an understatement.

Part of me was angry. How could she not be more considerate of my feelings? Hadn’t I raised her better than that? Of course I had, but this was one of those things I spoke of earlier: The things that lie outside of her understanding.

She gets that I am afraid of certain things. She understands. But beyond that lies the extent of my fears and anxiety and the emotional and physical repercussions over having to withstand these anxieties under extreme pressure in the situations that I am expected to perform. She doesn’t know what goes on inside my head. Her comprehension is only as big as her own life experience. And besides, kids shouldn’t have to understand certain things, right? It’s our job as parents to shelter and protect them.

But everything about our life as a family says different.

My children have been exposed to some harsh realities kids twice their age are unaware of yet. I am conflicted over the way it has affected/will affect them. I like to think they are attuned to the world and better prepared for the cold than most. But also, maybe they are missing blissful ignorance that comes with childhood. I don’t really know. Sitting across from her when I broke the news, which I felt was completely rational, it was evident we were not in agreement. She was angry, but underneath that anger I could see disappointment. Disappointment in my ability to measure up.

“Why couldn’t I just deal with it?” was what she seemed to say.

Even further beyond her disappointment, I could see that she resented me for making her feel like she was alone. My fears, my differences and my overall inability to be like the other parents alienates her. I tried to remind her of the times we went away and I was a panicked mess. It just didn’t seem to resonate on a level of understanding I needed it to.

Emily Klein.4-001

I have lost more than a week’s sleep feeling anxious, scared, sad and guilty. I don’t want my children to ever have to carry my weight, but at the same time, I want them to be understanding human beings aware that in every person there are differences. And they should, in the best way they know how, honor and respect these differences. I don’t think people should ever compromise their health or well-being, be it physical or mental for the sake of fitting in, looking normal or to keep someone happy, especially a part of one’s family. I would never want my children to do that, and I can’t teach them to honor themselves and be honest about their feelings if I myself am not.

Part of me is happy she still sometimes thinks like a selfish kid, and that I haven’t forced her to grow up too fast. As she does get older, though, my hope is that my vulnerability and honesty will enable her to understand better and be more likely to deal with the world easier because of her direct exposure to all things uncertain. Parents are afraid, too. We are human just like them. The only difference lies in our direct experience with the world and what we have learned firsthand to be true.

So what happens when a kid finds out their parent is afraid? The kid learns what it means to be honest and doing so sees that it doesn’t make them any less of a person. The power lies inside that truth.

I don’t think anyone has this parenting thing down perfect. I do consider myself lucky to have been blessed with great kids. They may not get it all the time, but they get it. And that’s more than I can say for most grown adults today. I like to think I had a hand in that. Until next time, stay weird.

Follow this journey on Awkward Is Awesome. A View From the Spectrum.

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.

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