First things first. I hate to upset the People First Language crowd, but no one “has autism,” because to do so would imply that you have a disease. And if you have no disease, then there would obviously be no cure.
So, looking at this logically, which is the only way my autistic brain knows how, Amazon was completely in the right for pulling books suggesting cures for a disease that doesn’t exist.
I find it strange that in the autistic community there are some who celebrate being the way we are and others who are upset by it. I get that… I guess.
People want to be normal, but what’s normal?
What people, including some that claim to be autism experts, don’t understand is that there’s nothing “wrong” with us. Are we different? Yeah. Is that a bad thing? Nope.
Some are calling it censorship while others refer to it as social responsibility. As a writer I can see the argument for the censorship argument, but as a person on the spectrum and as an autism advocate, I completely see this as social responsibility.
Look at it this way: would you want to see book after book selling snake oil? Telling you how to cure something that doesn’t exist? Or at the very least telling you that it’s possible to cure a disease that doesn’t exist?
Am I telling you that autism doesn’t exist? No.
I’m saying that autism is not a disease and thus has no cure.
I’m proudly autistic and nothing will ever change that.
Let’s play Devil’s Advocate for a moment and pretend that it’s not autism but rather being LBGTQ. Would you want books telling you that there’s a cure for being gay?
Absolutely not! While these books, “cures,” and “treatment facilities” do also exist, they serve only to harm people in the LBGTQ+ community, just like they do with anyone who has autism. Being part of the LBGTQ community – or the autism community – isn’t a disease or affliction, and therefore doesn’t need a cure. This is simply something you are – right from birth.
People rally against that sort of behavior now – being different doesn’t make you diseased.
The bottom line is this: you can’t cure people of being who they are. I was born autistic and I’m going to die autistic and that’s the way it is.
You can’t cure something that’s not an illness or a disease and anyone who says they can is straight up lying to you.
If you’re on the spectrum, I hope that you don’t fall for the cure conspiracy because there is absolutely nothing wrong with you. You are who you are, just as I am who I am.
I do feel bad for the writers that took the time to write and publish their books only to see them pulled from the world’s largest bookstore, but when those books promise something that they can’t deliver, they need to be pulled.
The bottom line? I’m not sick. I’m on the spectrum.
This post was previously published on Good Men Project and has been reprinted with permission of the author.
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.
First, let me make sure to welcome you to Club 299.
(If you’ve been diagnosed) on the spectrum and had a DSM, you’d be laughing.)
Welcome to Club 299. It’s an exclusive club. Aand of this writing, no one knows exactly what causes a person to be accepted into the club, but we do know that it’s it’s a club one is born into.
What is Club 299?
It’s a reference Dr Stephen Mark Shore, the only autistic college professor of special education, specializing in autism. Dr. Shore welcomed me to The Club while we were talking earlier in the week after he found out I’m on the autism spectrum.
But J.R. that still doesn’t answer the question. WHAT is Club 299?
299 is the code that the DSM (Diagnostic and Statistical Manual of Mental Disorders-IV) uses for Autism Spectrum Disorder, or ASD. The DSM is the book people in the mental health field use for insurance coding and other such things.
Thus, being in Club 299 means you’re on the autistic spectrum.
Once again, if you’re on the ASD spectrum, welcome to Club 299.
The DSM-V was published in May 2013 and lumped everyone on the autistic spectrum into a single category, and officially getting rid of Asperger’s Syndrome as its own disorder. Honestly, though, every practitioner I’ve ever encountered since still uses Asperger’s Syndrome as a stand-alone diagnosis.
It may sound like it’s a boring club, but we’re actually a pretty awesome and quirky group. Many of us are musical and extra creative, so our meetings always have a bit of pizzazz to them.
We tend to win at paintball because people on the autism spectrum are known for being logical, out-of-the-box thinkers.
And really, who doesn’t want a bunch of logical, out of the box thinkers planning the attack on the enemy flag?
Contrary to popular opinion, Club 299 IS where the cool kids hang out. Other people may not know how chill we are, but there’s no reason that we can’t all consider ourselves a part of the fun group.
I’m still trying to come up with a hand signal that we can throw at each other as we pass on the streets so we can represent. I’ll let you know when I figure that out.
Please, DO NOT go asking your caseworker if they know of any Club 299 meetings in your area as Club 299 is more of an idea than an actual physical club.
It provides a sense of belonging for those of us who were born autistic (ASD). We’re a group of people who can understand us, and vice versa. How cool would that be if you could live your life knowing you’re a part of something like this? Again, if you’re on the autism spectrum, you’re already in the club.
Come on in and join us.
This post waspreviously published on Good Men Project and has been republished with permission of the author.
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.
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.
Some days, despite the blessings I have, I am reminded over and over and over again that I do not have the one thing in my life I thought I would have: a child.
Children.
It seems like everyone I know is expecting their first, their second child. And I try really hard to be happy for them. I try so hard to mouth the right things, because I am happy for them. But every one of those words of congratulations tears open the scars – I will never have a child. Not a child of my own. (And I do very much consider an adopted child to be my own, by the way.)
My wife is not just simply not ready, but also not…capable. I’m not talking physically, but emotionally. I’m already keeping our home together, taking over pretty much every responsibility.
I may be a bad person, but I can’t take care of all of our details, make sure she’s taking all of her medications, and be the sole caretaker of a child as well. Hell, I doubt we’d be able to qualify for adoption if I have to somehow bind everything together, and honestly, I don’t think that would be a good environment for a child anyway.
So. I’m left with a bitter choice that I can’t actually make: my wife, or my life-long dream of a child.
