Woman looking at birds flying over water

Dear Autism,

Because of you, there is no such thing as a quiet, flickering light for me.

There is no such thing as a moment with complete comfort, unless my mind is shut down.

Because of you, there is no such thing as complete confidence for me. Anxiety debilitates me.

Because of you, there is no such thing as a dull moment for me.

There is no such thing as a moment where I can feel content with where my body is.

Because of you, there are painful moments people cannot see. Even in the smallest things others might not notice. The smallest things (a slight change in routine/ritual, a certain sensory sensation) keep banging at my head like a hammer beating through my skull.

Because of you, there is no such thing as clear communication for me. The closest people I know think I’m being childish, I hate them, and/or this is happening for “no reason” as I am ignoring, screaming, crying, injuring myself and attacking them.

I am not angry at them, I promise. I am just angry at myself. I’m angry at feeling like I have to lash out or shut down for the words that find their way into my brain and hide. They hide, they bother me, and my chest and body is on fire for those words I cannot speak.

Because of you, there is never a moment when I’m not lost. I feel trapped so deeply inside myself, I cannot show one who I really am or how I really feel. My own mother for 19 years still tries to this day to find and understand me.

Because of you, there was never a dull moment in every milestone I reached. But no matter how small it was, it was always cherished because it meant I struggled more than most other kids to get there. And that was because of you.

Because of you, there is no such thing as a dull moment when I’m hidden in your repetition.

The times I pace the floor for hours to listen to the same songs….

The times I am on my toes, feeling as if the weight is lifted off my shoulders as I smile at the ceiling or the sky…

The times I rock back and forth to a sound or song as I am sitting…

I’m with you in my own personal world I created with you. And I like it. I understand this world, and things go my way in it. And most importantly, I can be freely autistic.

If it weren’t for you, I wouldn’t find joy in the little things in the world the way I do…

When I look at the sky and see four groups of birds flying to their own little rhythm as if they were swinging around like the performers in a circus show.

When I look down and see the beauty of ice crystals individually clinging to the top of each strand of grass, glistening in the sunlight on a cold day. It’s amazing, it’s wonderful.

If it weren’t for you, I wouldn’t find my place and my passion as I have.

Who knew I could spend hours at a time reading on one scientific study after another?

If it weren’t for you, I would be exactly where I am today, but I wouldn’t understand how to appreciate it.

And most importantly…

If it weren’t for you, I wouldn’t be the Lexy Locker everyone I know closely loves dearly.

Sincerely,
The person who’s lived with you her whole life

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I’m making a list and I’m checking it twice… and thrice… and whatever words means a fourth time and a fifth time. After one final go over, I pull up the calculator app on my phone, tally up the cost of each item on the list, and I know the word that comes flying out of my mouth confirmed my spot on the naughty list. Again.

As I grab my keys and coat and decide I have to go to Target for the 45th time this holiday season, I’m stopped by the Ghost of Christmas Past. Snatching my Red Card from my hand, this ghost of years gone by not too gently screams in my ear, “Remember last year? And the year before that? And the year before that?” I put on my best innocent face and tell the ghost I have no idea what he is talking about, snatching my Red Card back because I have to go shopping for my son, Ryan.

The lists between my three kids just don’t add up. Again. They never have. And in years past, I thought it mattered. I mean, really mattered. Sitting in the Target parking lot, with the Ghost of Christmas Past’s voice still ringing in my ears, I frantically search the internet on my phone for some last-minute Christmas ideas for Ryan. As I type in every word having to do with Pokemon in Google’s search bar, it hits me that I do remember last year, and the year before that and the year before that, so, I put my car in reverse and head back home.

I love my kids equally, yet, differently, because they are each unique individuals whose love for me and from me is as unique as they are. However, at Christmas time, I feel like everyone must be treated equally by the number of presents received and the amount of money spent on each one. And unfortunately, it always seems like Ryan is on the short list.

Here’s the thing, though, Ryan has never wanted much “stuff.” Oh, sure, he has a few items on his Christmas list…all video game-related, but, after only two or three games, his list is complete, unlike his siblings whose lists go on and on and on. His list on paper (or in this case, in Notes on his iPhone) is different, but it’s not less.

Even when Ryan was younger, he never played much with toys, not in the way you might expect a child to play with toys. What he played with and how he played was different. Yet, as the Ghost of Christmas Past reminded me, that didn’t stop me from spending hundreds of dollars on stuff Ryan didn’t care about or want. Toys, video games and clothes often ended up at our neighborhood yard sale unopened and in “brand new” condition. I could have had my own eBay store from all the stuff I so desperately thought Ryan “had to have.”

In many ways, Ryan is incredibly practical. He may be aware of what other kids have on their Christmas lists, but he doesn’t care enough to join the masses. “Why would I want a bunch of crap I don’t even know anything about?” he asks me. Ummm…I guess because it makes “Santa” feel better? And that’s what the not-so-subtle Ghost of Christmas Past was trying to tell me. For many Christmas pasts, “Santa” made it all about my needs and wants, not Ryan’s.

As with so many moments on this autism journey, I had to step back and ask myself, is this about Ryan or is this about me? More times than I care to count, it has been about me. Even at Christmas. (Insert holiday guilt here).

I think early on, I wanted Ryan to be like all the kids on the toy commercials, in the neighborhood and in his school, that somehow I thought he should get all this “stuff.” But Ryan was Ryan, and every toy on the Hot Toy List wasn’t going to change him.

Thank God.

Ryan is unique. He is different in so many beautiful ways, so why shouldn’t his Christmas list be as unique as he is? Even though his list is much shorter than his brother and sister’s lists, I think Ryan will be thrilled with what he finds under the tree on Christmas morning, so why should I fill one more Target cart with stuff to make me feel better?

This Christmas morning as my daughter Emma opens up her 12th pack of Shopkins, and my son Kyle sports his latest Green Bay Packers Jersey, I believe Ryan will be happily playing Pokemon Sun on his three-year-old Nintendo 3DS waiting for Charmander to evolve into its next form. And I don’t think he will believe his brother or sister are loved more than he is because they have an extra gift or two. My hope is Ryan knows he is loved beyond measure, and that no Christmas list can ever begin to tally up our love for him.

​And as I sit back in a room littered with wrapping paper and cardboard remnants, I will remind myself not to count the number of presents for each kid under the tree, but, to add up all the wonderful gifts I have been given in raising three uniquely beautiful children as the Ghost of Christmas Past slips out of the room and whispers, “See you next year.”

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I am extremely gifted at a few things, but there are certain things I can’t handle.

Last-minute schedule changes stress me out. Meltdowns are the worst, and having one in public is embarrassing as hell for me. A woman in her mid-30s crying like a child. I hide and cry. This also happens anytime someone I trust misleads me (because I trust few people).

Sometimes if the schedule change is big enough, I will go into a full-blown panic. It is worse if I feel like I am trapped and can’t say no — I feel like I am drowning every time this happens. I know how to recover from them, but they are not under my control.

My meltdown is not a tantrum — it is a true expression of inner feelings I can no longer contain. The dam has broken, and a flood is imminent. Everything I’ve been holding in has got to come out.

People think I am being dramatic or exaggerating things, but I literally can’t stop a meltdown. In addition, the thing I am reacting to may seem small to them. They don’t see things from my perspective or know all the other factors that went into building that meltdown.

Maybe someone I love just passed away, or I am feeling sick, maybe I am having horrible PMS, or trouble sleeping, or sometimes my social anxiety gets out of control.

These are the things I don’t talk about that affect me.

I tend to bottle everything up, which can’t be healthy. And eventually, like a can of frozen soda, when the pressure becomes too great, I pop! I’ve done this all my life.

It’s too late once a meltdown has started — they have to run their course. Sometimes if I get away fast enough, I can help one pass more quickly.

While meltdowns are physically and mentally painful and I never want to have one, in my experience, sometimes the relief felt after one is amazing — especially if I’ve been under extra stress. I always feel worn out afterwards.

Please be compassionate the next time you see a 30-something woman crying in public. You don’t know what she’s got going on. She might be autistic, she might be stressed, she might even be me.

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