RIP Autism Blogs

By on December 29, 2016 in Autism

I think 2016 is most notable for how many celebrities passed away. Not just celebrities but like, legendary celebrities that revolutionized what ever it was they did. There’s also the whole election thing, but what ever… moving on.

In the autism community, something else died. It faded away. Only, most people never really noticed. Autism blogs.

I was looking through the list of autism blogs that I have along the side bar of this very blog and noticed that not one of them has a post in 2016. Some stopped updating as far back as 2014. Most in 2015. In 2016… no signs of life. All vital signs… flat lined.

I’m not really one to talk, I’ll admit it. My last post was in April, this is very near the end of December now. So what’s the deal? Well, for me, I got busy. I started Autcraft and it literally exploded in popularity, not just within the autism community but also in the media and even with researchers.

What happened to autism blogs in general? Why did they fade away? Why have parents stopped writing?

Social Media

In the beginning social media drove traffic to our blogs. It was great. You start a fan page or a twitter account, post links there to your blog posts and people start flooding in. It was the easiest thing in the world. But social media evolved and the people did too. People didn’t want to go to social media just to go somewhere else. People wanted to read what you had to say right there, where they are, without having to go anywhere else. That’s basically what social media sites are designed to do… keep you there, not send you elsewhere. And it worked.

Autism bloggers found that they had unlimited space to write what they wanted right on Facebook, or Google+ or Medium… not so much Twitter. People commented there. They shared there. They liked there. And the more they did, the more other people saw it. None of that happened when the person went to a blog to interact with you.

So the writing moved. With it, so did the writing style because you couldn’t just post links within the posts anymore. You couldn’t just embed images or style things the way you wanted anymore. So “articles” became “posts” and “posts” became “status updates.”

People don’t have time to read a whole article anymore anyway so the shorter it was, the better. Which brings me to…

Time

As much as autism parents don’t have time to read long articles anymore, they also don’t have time to write them. It gets even worse when you write them and then go to other people’s blogs to read them too. Your whole day ends up being consumed with blogs when, as we autism parents know, there’s very little “free time” as it is.

So those autism bloggers who loaded up social media sites to see what friends and others are doing, they would just update their life there. Where those people are. There was no point in going to some other website, signing in, writing a post, proof reading, spell checking, styling, finding images and styling it all just to go back to their social media sites to share the link with people who don’t want to have to go there just to read it. You’re better off just skipping the fancy stuff and putting it right on your social media page. Less time for you and the reader that way.

Money

Social media is free. Well, sudo free. You get ads and stuff which pays for it but you personally do not have to pay anything for it. A blog on the other hand, you do. If you want a custom domain name, if you want a custom look and feel, if you want to do give-aways… chances are you have to pay for all that. There are ways around some of those things but it takes work… which also equates to value. Money.

On Facebook though, you don’t have any of that. You just type what you want to say, hit the button and you’re done. Hassle free. No domain, no files, no plugins, no themes… if time is money, then just putting your thoughts into a Facebook post instead of a blog is priceless.

The Future

I am a little sad that autism blogs don’t seem to be a thing any more. For some reason, it was just easier to find other autism parents that I could relate to when I would go from blog to blog with their shared links and read about their experiences and feel like I knew them a little bit. That’s tougher to do in social media when your only real interaction with someone is a shared comment on someone else’s thoughts on the latest television show. Also there’s the whole friend request or “follow” thing. I think most people feel a lot less awkward about just having readers than they do in having people be on a friend list.

Many autism parents do still try to help each other out though by sharing each other’s Facebook fan page updates or giving shout outs and things but it’s just not the same. Perhaps I’m just nostalgic.

The autism blog era may be mostly behind us but it’s not completely. There are still some autism blogs out there and some new ones starting up all the time. Plus, there are still people doing actual writing on the subject and about their families, they’re just harder to find now but they are out there.

Also, those people who do friend some other people they find on social media turn out to be very good friends, even meeting each other in real life after a while. That doesn’t normally happen with readers on a blog. So there’s that.

I guess what I’m trying to say is… RIP Autism Blogs. You will be missed.

But there’s still lots of good stuff for us in 2017. We just have to adapt and make the best of what we have.

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The day ‘hackers’ told 6 year old autistic children that they should ‘kill yourself’

By on April 23, 2016 in Autism

For those of you who don’t know me, I started Autcraft, a Minecraft server just for children (and adults) with autism where they can play the game safely, free from the bullying that they found on other servers. Up until April 6th, 2016, I had done a pretty good job of that. But first, let’s go back to 2013.

In June 2013, I started the server and told a few hundred people… 2 days later, I had 750 emails in my inbox. Word had spread like wildfire. Why? Because there were far more kids being bullied than I had realized.

About 3 weeks after launching the server, I got word from hackers and trolls that their fellow hackers and trolls were targeting the server. Three weeks. That’s all it took. And the server has been under constant attack ever since. I’ve never told anyone that until now.

In part of my job of keeping these children safe, I keep this information from them. It hurts to know that there are people in the world targeting them around the clock, around the year, simply because they exist… simply because they have autism, something they never chose for themselves, something they can’t possibly do anything about. In fact, I struggled for a little while in deciding whether or not to even write about this… but here I am.

2016-04-06_19.45.42_1460336

Click for full size

On April 6th, 2016, two people attempted to hack into the Autcraft server and failed.

What they did succeed in doing, however, was to hijack our IP address, effectively redirecting all the traffic from our server to a server of their own.

The children that signed on to play, some as young as 6 years old, signed on to their server instead of mine. Once there, they were encased in a bedrock box from which they could not leave and were told that they were rejects from society, degenerates and that they should kill themselves.

When I asked these guys why they’d do such a thing, they responded “it’s funny.”

They told us that we’d never figure out what they had done or how to stop it and that they’d continue doing it unless we paid them $1000.

Less than an hour later, with the help of the incredible guys at EZP Hosting, we had regained control of our IP and moved the server to another location. The good news is that only a few of the children ever came into contact with these monsters. The bad news is that a few of the kids came into contact with these monsters.

Having failed that, they turned to a DDOS attack, attempting to make Autcraft unplayable for everyone because if they couldn’t tell the children to kill themselves directly, then they’d at least try to take everything away from them that they could.

This attack was quite massive in scale and was maintained for almost two weeks straight. Luckily, again, we were able to outsmart them and find ways to get around their attacks and the children played on, completely unaware that anything was even happening.

I wish I could say that these were the only people who’d do such a thing but they’re not… not by a long shot.

This is the reality for a child and even for an adult living with autism.

Monsters lurk in the shadows of the Internet, ashamed and afraid to show their face but all to willing to tell perfectly innocent little children that they are rejects and should kill themselves.

Now my hosting costs have gone up, having added in new anti-DDOS measures, more services, better protection. Every time these things happen, the amount of work and the amount of bills goes up, all in an effort just to play a game in safety, like everyone else takes for granted.

For the record, I got the guy’s home IP address and gave it to the police… they will do nothing.

I got the guy’s IP address and username and gave it to Mojang… they will do nothing.

We are left with no choice but to continue to hide away as many autistic children on my server as we can, where they’ll be safe… or at least, as safe as I can make it… and why?

Because the monsters are still out there and no one will do anything about it.

People still ask me why I created Autcraft. This is why.

If you’d like to contribute and support Autcraft, please become a Patron at https://www.patreon.com/autismfather?ty=h or donate directly at http://donate.autcraft.com

Thank you.

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Dad, what happens when you die?

By on November 30, 2015 in Parenting

My cat, Prince, my friend for 17 years, is dying. He hasn’t eaten in over a month. He’s very skinny, moving slowly. The kind of thing that even my children can’t miss. Which lead to a talk about preparing for Prince, the cat that is the combined age of both of my children put together, to die soon.

Often while putting my boys to bed, they’ll ask me a question. It’s usually a science question. I figure the reasons being that they truly are interested in science combined with the fact that they know I’ll sit and talk about it rather than tell them to just go to sleep.

Tonight, they asked me what happens when a person dies.

I explained to them that some people believe that if we are good enough, we go to heaven after we die and we see friends and family that have died before us. Some other people believe that we simply… stop, like going to sleep and never waking up but never dreaming either, just no longer existing.

This is heavy stuff for a 10 and 7 year old.

Big BangThen I said that I believe it’s somewhere in the middle because of what I know about science.

I told them that scientists have looked into our molecules, into our atoms and found the very same elements from the big bang… the very start of our universe. The same things that are found in stars and galaxies billions of years ago, billions of light years away, are found right here, in us. Everything in the universe is connected and can be traced back to the big bang… when time and space, as we know it, began.

Again, pretty heavy stuff for a 10 and 7 year old.

So I said “Do you remember when we talked about the Sun? How it’s a big fiery ball of plasma in space and how it’s putting out a ton of energy all the time? It’s moving, it’s emitting light and it’s emitting heat… all of that is energy that the Sun is sending out into the universe all the time. Remember how I said that energy never dies? There is never more or less energy? It just goes somewhere else or becomes something else?”

I continued “We are basically bones and muscles and hair and stuff that is holding in our energy. Some people call it a soul. It’s you and me. It’s the energy that allows us to think, to remember, to move and control our bodies. It’s the energy that stays inside of us until we die. But then when we die, what happens to it? Energy doesn’t die. It doesn’t stop existing. So where does it go?”

They just stared at me. Yup, heavy stuff for a 10 and 7 year old.

So I went on, “That energy goes outward from you, like it does from a star, like our Sun. Some of it goes back into the Earth where it’s used to create new life. Some of it goes to others around us where it becomes a part of them. Some of it goes up into the sky. Maybe some of it rejoins the Sun while other bits go along with the energy that the Sun is releasing, out into the universe, traveling for billions of years over billions of light years. Maybe some of that energy will find new stars, maybe even stars just being born. And those stars will have new planets around them. Some of those planets will get the same energy from their star that we get from ours and maybe… just maybe, life will grow. Maybe plants, animals… maybe a new civilization, not like humans but just as smart, maybe smarter? Maybe those aliens way out there, way off into the future… maybe one day they’ll look inside themselves and their molecules and atoms and elements and they’ll find traces going all the way back to the start of the universe, the big bang. And along with that, they’ll be seeing bits and pieces of…”

At which point Cameron, 10 years old, jumped up and said “Me!”

I finished off by saying “It’s not as nice and convenient as heaven, thinking that we’ll still be us and fine and happy but it’s also not as gloomy as just closing our eyes and no longer existing. But it’s what I believe will happen to us. I think we’ll rejoin the Earth, we’ll rejoin our friends and family and we’ll rejoin the universe. We might not know it or remember it or really be us anymore but we’ll be a part of something as big and vast as space and time itself. And for right now, while we’re alive and able to appreciate that, I think it’s pretty incredible.”

“The truth is that I don’t really know what happens. No one actually does. We can only make our best guesses and believe what we choose to believe. But now you know what I believe. It’s up to you to figure out what you believe will happen for yourself.”

I turned off the light and left the room. They did not sleep. For two hours, while I worked, I heard them talking about it. I was supposed to go in and tell them to stop. I was supposed to tell them to go to sleep.

But I didn’t.

 

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This is why no autism story or program will ever be perfect

By on October 26, 2015 in General
Julia is a new character on the children's show Photo: Sesame Street

Julia is a new character on the children’s show
Photo: Sesame Street

So the Sesame Street #SeeTheAmazing autism program was launched and shared and talked about like mad and of course, torn to shreds and judged and attacked.

Why? Well, I could go into the details but honestly, the details don’t really matter. This has happened with every program and story ever created and will continue to happen.

No one autism story takes every single perspective into account. They just can’t. Many of the perspectives conflict, making it very difficult to include together and there are just so many that it’s nearly impossible to remember to include them all.

Personally, I’m attacked every single time I talk about how great a person with autism can be, because I’m not talking about how disabling autism can be. Then I write about how disabling autism can be and I’m attacked because I’m not making autism sound like the best gift ever.

This happens every single time.

Cure vs acceptance
Parent vs autistic
Person first vs Identity first
Children vs adults
Independent vs dependent
Verbal vs non-verbal
Boys vs girls
Toxins vs genetics

It really doesn’t matter to whom you are talking or whom you’re talking about or what position you take or how much good you do. None of that matters.

You will be hated for it.

Sesame Street’s program isn’t perfect because I didn’t create it. Even if I did, it would only be perfect for me. Not for everyone else. Lots of people would hate it.

That’s the whole point.

This is why we don’t only have one company doing one program or one person telling one story.

Parents will reach other parents. Autistics will reach other autistics. Somewhere in the middle of it all, we’ll all reach each other. But not everyone will like it.

There’s 2 things we should work on in this regard:

1. Don’t attack each other. Constructive criticism is educational. Hateful attacks create closed minds. Show people how your story is different. I’m sure they’d even appreciate that. Just don’t attack them because their story doesn’t align with yours.

2. Don’t take the criticism personally. Some people are not going to like what you say because it’s not what they wanted you to say. So long as you have something to say, there will always be people who will want you to say what they want said. It’s personal for them, it’s not personal against you. They’re allowed to wish you said what they wanted to hear.

If you are doing good work and making a positive impact and changing lives, keep going. Let other people worry about their own programs and their own stories.

There’s more than enough room for everyone and there is more than enough stories.

That’s where real autism understanding and acceptance comes from.

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A review of the HBO autism documentary: How To Dance In Ohio

By on October 13, 2015 in Autism, Autism Review
How To Dance In Ohio

How To Dance In Ohio

So you’ve watched all the autism movies and documentaries and found that some were hard to watch, others you could relate to quite well and some were even enlightening but I can guarantee that you’ve never seen one as powerful as How To Dance In Ohio.

Synopsis

How To Dance In Ohio is a documentary by Alexandra Shiva that follows a group of young autistic adults as they prepare for their first formal dance. They must learn how to ask each other out, how to handle rejection, how to hold a conversation, how to dance and in some cases… share that first kiss. More specifically the film focuses in on 3 young woman ranging from 16 years old to 22 years old as they navigate family life, moving on from their family and having a job.

Release Date

October 26, 2015 on HBO

Review

You get a sense that this film is going in all the right directions as soon as the film starts when the first scene opens with actual autistic people talking to you and expressing to you how they feel. There are no actors, there is no narrator, there is no big production made about what we’re about to see. There is simply a young woman, with autism, in front of the camera, saying “We like to socialize, but it’s just, we don’t know how,” and from that moment, you know you are watching the right movie.

As the viewer, you get to sort of ride along with this group of autistic young adults over the course of 12 weeks as they prepare for what is quite literally, one of the scariest events possible… a formal dance. I know that most people would chuckle at that or think it’s silly because the average person tends to look forward to social functions like that. This film not only explains but shows you very clearly why it is as scary as it is for those many people with autism. While other films with actors and writers try to create the perfect situation or accurately portray what may happen, How To Dance In Ohio has only very real people in very real situations dealing with them as best they can.

The real strength that How To Dance In Ohio has is it’s ability to capture very real moments as they happen, as though there was no camera there at all. When you see these people cry, or behave in some awkward way or when they laugh, you feel how genuine that is. You suddenly realize what all those other autism films have been missing all along. The actors in autism movies have incredible talent and did great work in their respective films but no one can ever truly understand or convey what it’s like to be autistic quite like an actual autistic can.

It isn’t until you’re watching a documentary like How To Dance In Ohio that it hits you; you will never know what it’s like to be autistic without talking to an autistic.

I fear that the only downfall for this film and any film or book that does such a great job of depicting the struggles (and triumphs) of autism is that those who do not have autism directly affecting their lives won’t give it a chance until they have to. How To Dance In Ohio is such a great documentary but it’s also a very powerful tool for autism awareness, showing people what autism is really like in a way that not many other films have been able to. In one scene, Marideth, a 16 year old young lady with autism is talking with her family at the dinner table and all seems great until she just gets up and walks away. She’s still a part of the conversation and everyone is still happy but she’s just up and gone. To the average person, that would seem odd or maybe even rude. But to an autistic or someone close to someone with autism, we totally understand that!

There are so many key moments in How To Dance In Ohio where I feel that most people wouldn’t even notice but as an adult with autism myself as well as the parent of a child with autism, I find myself feeling this very strong bond between myself and those on the screen in those moments. They’re so tiny and likely insignificant to anyone else but I just know that those already within the autism community are going to pick up on them in the biggest way and go back and watch them again because they touch them so deeply. Powerful moments likes these can’t be scripted nor prepared for, they are real moments that can only happen spontaneously from someone that is living in that moment and Alexandra Shiva captures them so perfectly in How To Dance In Ohio.

As I watched, I messaged friends that are also parents of children with autism, telling them that this is going to be a hard film for some people to watch. I relayed some of the things that the autistics within the film would say, such as “Cartoons don’t judge you like people do,” and we all felt our hearts sink together. We know that feeling.

As hard as How To Dance In Ohio is though, it’s also incredibly wonderful to watch with so many moments of laughter, triumph and of course, tears. None of it scripted, none of it prepared for or anticipated.

If I could make every person on Earth who has no prior experience with autism sit down and watch any one movie to understand what my own life with autism has been like, How To Dance In Ohio would be that film.

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