It’s Autism Awareness month here at The Band, and we need you! We encourage everyone to share their stories about autism, what it means to them, and how they deal with it. Please, share your stories with Band Back Together. You can even do it anonymously.
Thursday I went with my daughter to our local theme park. It’s been many years since I’ve been to one – after a couple of hours at Silver Dollar City in Branson, MO I remembered why I don’t go to them.
Between the crowds milling around, moving to and fro in no discernible pattern, and the noise hitting my ears from all sides, I was in autistic hell.
It was because I didn’t properly prepare for the day.
My daughter works for a large, high-end resort and got a smoking deal on season passes, so we each got one. I figured I would mostly use mine to go, walk around a bit, people watch and find a table where I could sit with my laptop and write.
But not this time.
It was our first ever trip to the park and we only were spending a few hours there because my daughter had to be at work. So we rushed from place to place.
That was my first mistake.
I should have gone to the park for the first time when there was no pressure to be anywhere anytime soon. That way, I could mosey along and find a quiet place to sit and take a break when things became overwhelming.
There was no time for that. I was trying to be a good dad so I followed my daughter from place to place, taking only small breaks while she went on rollercoasters.
Rollercoasters are a no-no for me since I had a stroke sixteen years ago, so I avoid them at all costs. I’ve been mocked by people for “being a grown man” and being afraid of roller coasters.
It’s not that I’m afraid, I just don’t need my equilibrium off center for at least the next few hours.
If you have never dealt with sensory overload, be thankful. It can be hell. This day wasn’t quite hell, but it wasn’t heaven either, so I’ll call it Catholic purgatory. That somewhere in between.
When we finally got home, I laid down for a couple hours and it helped a bit, but not as much as I hoped. I spent a couple of hours editing articles for Good Men Project, and then crashed for the night.
I woke up feeling much better and went about my Friday just fine. Until 6 pm. That’s when my Friday night ritual starts. It’s also the way you can tell that I’m single.
Friday night is what I call, Nerd Game Night at my local comic book shop. A bunch of my people gather to play Magic the Gathering, Dungeons and Dragons, Pathfinder or whatever else they want to play.
Normally I handle Nerd Game Night just fine, but this night was different. This night it seemed louder than usual and I needed a few breaks outside where it was quiet.
I asked Gail, the store owner, if it was louder than normal and she didn’t think so, which leads me to believe that this was residual from my day at the theme park.
The good thing is that every time I have an episode that overwhelms my senses, I learn something. This time I learned what I need to do when I hit Silver Dollar City the next time.
I’ll definitely have headphones, even if there’s no music playing, just to drown out some of the noise attacking me from all sides. I also learned that I can’t go on days when I feel rushed.
I learned that as I plan my day at the theme park, I also need to plan some extended down time the next day – possibly a little longer.
Being on the spectrum doesn’t mean that we have to stop doing things that most people consider a lot of fun. It just means that we have to sit down and use our out-of-the box thinking brains to plan our adventures properly, so that the day is fun for us as well.
Thursday wasn’t a wasted day, I look at it as a day of scouting and strategic planning for the next time.
If you deal with sensory issues, don’t let it stop you from spending time with friends and doing enjoyable things. With a little planning, we can enjoy the same things everyone else does, just in a different way.
If you have sensory issues, what do you do to help overcome them? Share your ideas with us so that we can all be better prepared for our next big day out!
This post was previously published on Good Men Project and is reprinted with permission from the author.
It’s Aunt Becky here rocking the suburbs like Ratt tried (and failed) to do. Even with two “t’s?”
March was a weird month for me – it felt that it both flew by and was extra long, although we all did survive the Ides of March, though, tragically Caesar did not. Presumably, if you’re reading this, you did, indeed survive. Congrats!
On Sunday, we had an excellent amount of posts come in for trans visibility day, so if you haven’t seen them, I suggest you do.
This month, we’re mixing things up like Grand Master Flash, so please take a gander:
You can post any post about anything – as always – but we’re looking for all kinds of stories and writers and non-writers. In fact, we’ll happily take any and all posts that have been published before. Don’t worry if you’re not a writer because we have an excellent editing team (shout out to Rosalie)!
I’m super excited for all of your posts, especially the “hear’s the deal” ones. See, for these posts, you get to be open, honest, and explicit about something in your life, such as here’s the deal for Autism. Or loving an addict. Or, as you will see tomorrow (TUNE IN), my own post about the state of mental healthcare. Really, vent away!
I know some of the stories you could tell aren’t “as bad” as the others, but that doesn’t change them from being important – we’re not running the pain olympics and as far as we’re concerned, if you have a story, tell it. I know, I know, it’s hard to do, but it’s a task I’m making myself do, because it matters. All of it. It all matters.
And as always, we’re expanding. I’m hoping that we do, in fact, get moved to the next theme, which our site guy Matt is taking care of. We know this theme is a bit wonky so we’re mixing it up and making it a bit more user friendly with functioning things like links.
If you don’t already follow us, you can find us out and about on social media (shout out to our amazing team of social media gurus who make everything easier for us!)
I’m really thrilled to read all of your stories this month, and remember this: you can write anything about any subject at any time. Don’t feel constrained by the calendar.
If you need me, you know where to find me: becky@bandbacktogether.com
91% of victims of rape and sexual assault are female, and nine percent are male.
Sexual assault can utterly change everything about who you are.
This is her story:
I am completely broken.
Bold statement, I know, but hear my story and you will understand. (to be clear) I don’t need pity, nor do I want to be saved. Understanding, though, never hurts.
I’ve always taken a liking to academia; I was a natural scholar who skipped the first grade. I had art published in the local newspaper when I was, say, five years old. It was a serviceman in rainbow camo gear holding the American flag, if anyone was curious.
I’d say that was my peak.
I was in third grade when the bullying started – the other kids even dedicated a song to me on the playground! How lucky, right? I was pudgy, I suppose; the fattest kid in the class, fat enough to be the ‘chosen one.’ I cried every single time I went shopping with my mom and sister. I begged that I’d cease to exist, ‘so no one has to worry about me’ –direct quote. This continued for years – seven to be exact.
At least you’re noticed in elementary and middle school. Maybe I wasn’t noticed for a good reason, but I was noticed. I played sports throughout junior high, always had a perfect GPA, I had plenty of friends, and a decent social life. But I was The Friend, not The Girlfriend. I remember during a Halloween dance, I literally begged a boy to tell me why he didn’t like me. He simply walked away and asked my best friend to be his girlfriend. I wasn’t mad; I accepted it.
High school was when the shit hit the fan.
My first two years of high school, I was really involved in class office, never running for a position because I knew the prettier and thinner girls would win. It’s high school, ya know?
I accepted squeezing in wherever I was allowed to. I wasn’t bullied much, but I was ignored. Sometimes, I preferred it. Don’t get me wrong, I had great friends but I was always chasing the fun, chasing the social scene.
Sophomore year I had my first taste of alcohol and weed. I loved it. It felt great to have a secret, something behind the backs of my straight-laced, God-fearing friends. Soon, though, my friends didn’t like me. I remember sitting alone at a table in the library, my old friends at the table next to me, ignoring me. I begged them to tell me why they didn’t like me anymore; they shrugged and walked off.
I transferred schools to a dual enrollment program.
Oh, did I mention I had ballooned up to 250 pounds? Yep. My weight was largely ignored, not discussed, and accepted. But I got sick of it, so I lost the weight – worked out constantly and methodically, eating like a champion.
By the time I got to my new school, I was thirty pounds lighter and thought I was hot shit. I smoked a lot of weed, drove around in my new car with my hip friends, and smoked cigarettes. I even got my first kiss—so what if it was my best friend’s boyfriend? I got it, and I liked it.
I craved male attention and I entered into this ‘I deserve it’ mode. I thought I owed myself a treat, and boy did I get it.
December 8, 2007. Fall semester, senior year, I was golden. There was a new guy every day that wanted me; I dangled myself in front of them like a piece of meat, but I never gave an inch. Not because I didn’t want to, but I was too nervous. With about three kisses under my belt, I was CLUELESS.
But yes, back to that date. That’s when it all went to shit.
I went to the beach with a few people where we drank a lot of whiskey or rum. I remember the initial vomit hump—you know when you gotta puke once to get the ball rolling? I remember looking up to see his face, and I know, looking back, what he was doing. I hear the brain blocks on memories you can’t handle, and thank goodness for that.
I lost my cell phone and my virginity that night. I didn’t even realize it until I went back the next day, saw the condom wrapper, and pieced it together. I quickly covered it with sand so my mom wouldn’t be upset.
Oh, fun fact: in my attempt to go home, I went to a ‘friend’s’ house to ask for help—in the weeks following, I asked him about it, and he said I wanted it just as badly as he did – that I came on to him.
I figured it wasn’t worth it – that I, for some reason, didn’t deserve normalcy. So I went with it, like I went with everything. I made it out to be funny, I buried it deep and far away. I joked about myself – called myself every name in the book. I don’t even know how many people I’ve slept with since that time.
Since then, I’ve had someone attempt to rape me. Since then, I’ve been molested. Since then, I’ve done shameful things I don’t even want to type, but I will. I’ve done MDMA, cocaine, crack, heroin, acid, prescription drugs, and more cocaine. I’ve slept with people – multiple at one time. I’ve stolen money, stolen from stores, stolen from people I love. Since then, I have hated myself and everything, masking it with humor and cool clothes.
Then I met Zach.
Junior year of college, my first year in the dorms, I was nineteen years old. I always had a blast in college – my philosophy was “why think about bad stuff when you can think about the good?”
Zach was special – still is in my book. He had a long-term girlfriend and he hooked up with my roommate, while seeing me in between. I felt special for no reason. Through “healing” from my rape, I learned that I could have anyone I wanted. I knew how to talk and look and walk to get what I wanted. All I needed was a kiss: one kiss in the elevator of my dormitory sealed the deal. I was in love. He made me feel pure and real; like I deserved more.
This was the first time I realized how important and delicate sex was. I learned what making love was. I no longer made fun of romantic movies or songs; I felt the scenes and I listened to the lyrics and understood. We made love and cried, and it wasn’t corny or cheesy, it was real. And it was amazing. It was the first time I ever said ‘I love you’ to someone. When you experience that for the first time, it’s amazing. You feel important, you know someone is important to you.
I didn’t care about anything but playing “house” with him in my dorm. His dad hated me, my mom hated him, but it didn’t matter; we were in love and it was amazing. I’ll always miss that blissful month. I felt real for the first time in my life.
We moved in together when school let out in the spring. It got bad – screaming, crying, and covering it up with sex. I’ll leave out these details, but it was a textbook abusive relationship, on both our ends. We broke up the day before my fourth year of university started.
I’ve been numb since.
I’ve fucked many, kissed more, and drank a lot of alcohol. I feel empty. I quit going to class, and sat in my apartment for days in the dark, just smoking pot and sitting there. Sometimes, I’d sit for a few hours in complete silence, staring at nothing. I had no motivation – I couldn’t get up out of bed, I didn’t want to shower or brush my teeth or hair. I didn’t want anything in life. I didn’t want life. Every time I drove over a bridge, I struggled not to jerk my wheel just so I could breathe again.
Like I said, I am completely broken. I’m a cliché. Fat kid in desperate need of love and acceptance. Rape victim throwing caution to the wind and delving into a world of drugs and promiscuity. ‘That girl’ who can’t get over her ex. The typical depressed person who lives through every symptom you read on the internet. Smart kid desiring acceptance ends up failing classes due to active social life.
Today is a happy day as it’s World Autism Awareness Day. The day that autistic people can celebrate their uniqueness.
Being that it’s World Autism Day, I’d like to give you a little background on me and explain why I’m proudly autistic.
In fact, I was born before autism was discussed or even considered for school age kids – it just wasn’t something that people knew about. I was out of high school for more than a decade before autism was even discussed in schools.
I was forty-six years old when I was diagnosed with Asperger’s Syndrome.
What did that mean for me?
This means that I was the “odd kid” throughout school and subsequently, a large portion of my adult life. My teachers called me weird, stupid, and lazy in front of my classmates; and kids, being cruel called me even more awful, colorful names.
As I grew into adulthood and entered the workplace, my bosses became even more colorful – I had one guy who repeatedly calling me Forrest Gump to my face and in staff meetings.
It hurt, but I dealt with it as best I could; I knew they were right. I was odd and quirky. Thanks to this, my self-esteem was in the toilet for most of my life, even after my diagnosis. Luckily, it’s gotten much better in the past five years, especially during the last nine months.
I can see where you’d think that with all the baggage from my past that it would be hard for me to have a positive attitude about being autistic. Honestly, nothing could be further from the truth. I’m proudly autistic and that’s why my second book, not quite finished, is called Asperger’s Is My Superpower.
I really do believe that Asperger’s – which is a form of high functioning autism with more social and processing issues and less of what others on the spectrum may deal with – makes me who I am. I like who I am.
I’m quirky, fun, wicked smart, witty, all kinds of sarcastic, and I crave knowledge. I was told by my high school journalism teacher to give up my dream of writing, and here I am. I’ve got more than one hundred articles published in thirty different magazine titles.
I’ve written for a dozen major daily newspapers, scores of websites, created and maintained two blogs, a podcast and am a Lead Editor for Good Men Project. Plus I have a former NBC writer and producer knocking on my door wanting to discuss some writing projects with me.
Not bad for a guy who was told to give up his dream in high school.
To me, being autistic means that my brain is wired a little differently than most, but at the end of the day, the autistic brain and Neurotypical (NT or non-autistic) brain still function and figure things out, just in different ways. It’s that diversity, where everyone is a little different, that I love and I believe that it gives society what it needs.
Like most of my Aspie peers are out-of-the-box thinkers; we think both logically and factually. That may drive some people up the wall, but it’s who I am and how I roll, so I can’t really do anything about it.
What do I mean by “logical and factual?”
See, for the better part of my life I’ve been told that I’m not living up to my potential. I’m not sure how the NT brain interprets it, but my brain this is the thought pattern:
If you’re living up to your potential, you’re succeeding. Not living up to your potential means you’re not succeeding. Not succeeding is the same as failing, therefore I’m failing.
Now, I’m sure when this was said to me, it is NOT the message someone intended to send, but it’s what I receive.
People ask that if, given the choice, I would trade being autistic for being NT. I’ve always said no as that would mean giving up who I am. I’m not about to do that.
I’ll leave you with one final thought. There are a few ideas as to why people are autistic. Everything from vaccinations to gene mutation, with a few others in between. This is just my opinion, but here’s what I believe. Take it for what it’s worth.
I don’t buy the vaccine theory as people were on the spectrum long before we were getting vaccines at the rate we are today. Some argue that more people are being diagnosed on the spectrum than ever before, but in my mind, that’s because we’re learning more and more about autism; and with that comes easier recognition of the signs – not that a significantly larger number of people are becoming autistic.
I tend to lean toward the gene mutation, surprising no one – I’m a comic book nerd. Maybe that’s why I was drawn to the X-Men comics well before I was diagnosed.
The X-Men are mutants with mutated genes giving them special power – that’s how I see those on the spectrum. We’ve been given abilities that the general population doesn’t have and I think that’s awesome.
No matter the cause, I’m proudly on the spectrum and I don’t think anything will ever change that. I’m now an adult autism advocate fighting for the rights of those high school age and up; I do everything I can to help them live better lives and to educate those off the spectrum about who we are and what we bring to the table.
On this, World Autism Day, I would love to hear your stories of autism, both triumphs and tragedies. Use the comments section below and talk to us!
This post was previously published on Good Men Project and is reprinted with permission of the author.
Today we also remember the autistic children who have eloped and died.
A 2017 study found that almost a third of reported ASD (autism spectrum disorders) missing person cases related to wandering/elopement from 2011 to 2016 in the US ended in death or required medical attention. According to this study, accidental drowning caused over 70% of lethal outcomes, followed by fatal traffic injuries. Injuries or traumas found ranged from minor scrapes and bruises to non-fatal traffic injuries, near drownings, dehydration, and physical/sexual assaults after elopement.
Pie chart courtesy of the National Autism Association
Lethal outcomes to autism elopement occurred at a rate of about once a month on average in 2011 to about two to three times a month on average in 2015 and 2016. Children at ages 5 through 9 exhibited the highest number of deaths, while children under 5 faced the highest lethal risk with cases ending in death nearly 60% of the time.
Most people who elope or wander off were found in or near water, traffic, at a stranger’s residence, or in the woods. Low-sensory locations are also a common theme such as abandoned areas and vehicles, cornfields, farms, tree nurseries, libraries and other typically quiet settings.
People in this study were under different types of supervision when the elopement occurred, with non-parent supervision accounting for 45% of cases. Times of transition, commotion, and stress increased elopement risk, and those who were noted to be upset or agitated showed a higher risk of abruptly exiting into traffic or other high-threat situations.
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Today is one of the saddest days of the year for many on the autism spectrum as well as family members and loved ones of children on the spectrum. It’s the day that we remember those autistic children who have wandered away, died, or drowned over the years.
Why are we remembering these kids?
Because children on the spectrum are attracted to high-sensory places. In fact, when a young autistic child goes missing, families are told to head straight to the nearest body of water to look for them.
It doesn’t take much water to drown. A little boy was with his father walking in a park last year and had gotten a bit ahead of Dad, still close enough where dad could see him, when suddenly the child bolted.
After several hours of searching, they found the child face down in a stream in six inches of water. Six inches of water is all it took.
When I mentioned I was writing this piece, people asked me why kids autistic children are drawn to water. It’s because when we’re in water we tend to feel relaxed and comfortable. For someone on the spectrum, like me, I can say that most of us like it because there’s even pressure on our bodies.
Young children only know that they feel comfortable; kids don’t think about the fact that they can’t breathe, and we all know the end result of trying to breathe underwater:
Death by drowning.
How can we prevent these tragedies from happening? If we know we have a runner, we can focus our attention keeping them close. We can teach them to swim. We need to alert the local authorities about our children who wander so they can prepare in the event of an elopement. We can get a service dog.
Most people think service start at $10,000 and skyrocket from there but that’s not true. My service dog, Tye, came from Dogs Nation in southwest Missouri and is a rescue dog, just as all dogs are at Dogs Nation.
They work on a donation basis (and not from the families that take the dogs). They rely on donations of food, flea and tick prevention, dog houses and financial donations.
A service dog can help block the child from entering the water and if a worst case scenario happens and the child hits the water they can alert parents or family members.
Shawn Abell of Dogs Nation told me a story of something that happened nearly a decade ago near her home: A child went into the water and a nearby dog, a non-service dog who was a retriever, did what he was trained to do and went into the water to retrieve the child and saved his life.
Today is an important day for parents, family members, and loved ones of children on the spectrum and a day to educate those that aren’t aware of just how serious a problem elopement is. Amongst deaths of young autistic children, 91% die by drowning and that is way too many. Even one is too many.
If you’re reading this, please share it with families of autistic children and their caregivers so that no child has to go through this again and so that next year we’re not remembering deaths from 2019.
This post was previously written on Mommy Wants Vodka, October 2012.
Moving is not my forte. Well, I suppose that moving is NO ONE’s forte, but there are people who move for a living, so perhaps they enjoy their job. I can’t be sure. So I’ll go with “most people hate to move.” I, myself, as previously stated, am one of those people.
It’s not the packing or unpacking, it’s the goodbyes that go along with it. While moving from a house to an apartment wasn’t quite the same sort of job that required actual movers or anything, it was still hard to say goodbye to the home I’d been lovingly restoring for years. I never expected to leave.
I’d begun moving on Wednesday, the day after the Comcast debacle began, which, I’m beginning to doubt that Comcast actually DOES care, or they wouldn’t have made me waste approximately two days to get Internet, but that, my wonderful Pranksters, is neither here nor there. (but it does make an excellent story for another day)
Box after box, I loaded into the van, pretending to be an overly large ant simply bringing offerings to the queen. It helps if I can visualize something like that or I get annoyed at the bruises that now make it appear as though I’ve been thoroughly beaten with whips and chains or boxes I happened to fill just this side of too heavy.
Three trips later, we were nearly done transporting boxes from this place to my new home, all over but the furniture and a couple of boxes that could only be packed at the last minute because they contained items like, “Marshmallow Fluff” and “Socks.” I mean, a day without socks is a day not worth living, and I wasn’t stupid enough to wear flimsy flippity-flops to move in, although that does seem to be something I’d do. Four inch heals?Sure! Let’s go run a marathon! Imma beat you motherfuckers! Just as soon as I fix this broken heel and nurse the 27 blisters on my feet that I got already. Wait, it’s ONLY been two minutes? That’s bullshit.
It was weird, seeing my life packed up like that. I’d always thought that I had more stuff, but it turns out that my ritual purging had truly paid off. And not just because I’d already managed to dump my shit at the scary Salvation Army donations center, but because my life in boxes? Turns out, that well before this debacle began, I’d purged just the right amount of stuff to fit into my one-bedroom apartment. In fact, the only things I really needed to make my house a home were pieces of (cheap) furniture.
Target, you are my BFF forever and ever and ever. Except for the Pranksters who are my family.
Saturday, I brought my Muppet girlchild with me to the U-haul place nearby to pick up one of those truck thingies and managed to fill it – in one trip – with the furniture I could call my own, which means that I’ve been able to actually sit somewhere that is not the floor while I sort through my crap.
Slowly, I’ve been unpacking, cleaning, and placing things in my very own space. Because the space is smaller than the home I once lived in, it’s been much easier to utilize the space that I do have, paring down the items I own further, and making my apartment my home.
While leaving my home of 7 years has been incredibly hard, for the first time in my life, everything seems simpler.
Between the crowds milling around, moving to and fro in no discernible pattern, and the noise hitting my ears from all sides, I was in autistic hell.
