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

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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The effect that blaming autism on vaccines has on actual autistic children

Trump calls autism an epidemic as the result of vaccines

Trump calls autism an epidemic as the result of vaccines

So now we’re back to the whole anti-vaccine thing thanks to Donald Trump’s comments during the republican debates. Despite overwhelming scientific studies that have proven that there is absolutely no link between vaccines and autism, we continue to have people like Mr. Trump who prey on the fears of parents. I thought I’d take this time to explain to you what I see from the children that come to me asking if it’s true.

Most of the time, not always but a good 90% of the time, when a child asks me about vaccines and autism, they do so from a very personal place. Now granted, those other 10% of kids have a scientific curiosity and you can tell that they are genuinely just curious but for the rest, for all those other kids that I talk to, they’re worried and they’re scared. They feel like a mistake, an abomination and a victim.

I’ve talked to a lot of anti-vaccination parents and I know it’s not their intention and I know they love their children as much as any other parent but to be perfectly honest, that has absolutely nothing to do with anything. Intentions or not, this is about how a child feels when they are told that they are a damaged product of a broken system that their parent didn’t want. Harsh? Maybe but this is the message that the child is receiving.

You don’t understand the damage you are doing to your own child with this nonsense. You really don’t. Your child will never tell you this because they are scared to death that you hate them and what they are… a broken version of the kid that you actually wanted. You are damaging your own child even worse than what you think those vaccines are doing. Your children are reaching out to total strangers on the Internet in search for answers because they are convinced that they are not the child you wanted. They are convinced that they are the source of your anger and your rage and your disappointment.

And you will disagree me and you will tell me that it’s not your child that I’m talking about but I’m telling you right now, and please listen to me… you clearly don’t see the impact. I am talking to these children every day and it’s breaking my heart. No one can convince them that they’re not a mistake and no one can make them believe that their parents love them when they grow up feeling like they are the foundation of your hate. And these children won’t let their parents know this. They don’t want to hurt their parents any more than what they think they’ve already done.

Please. Please! My heart is breaking for these poor children. They can’t take this. No child should be feeling this way! You can’t do this to them. You just can’t. I beg of you. I’m not asking you to stop believing what you believe. I don’t know, maybe I am. All I’m asking is… please stop doing this to your own children. To all of these children. To every child everywhere that is scared to death that they’re a broken, disappointing autistic byproduct of being poisoned.

Please don’t do this to them anymore.

  • I am Stuart Duncan, owner of Autcraft, a world wide Minecraft server with a user base of 6000 children that have autism. I speak to many of these children almost daily about some of the most personal aspects of their lives. I will not be sharing names or direct quotes as I do not want any of those children to feel like I am singling them out or giving clues as to their identity.
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You are not alone

you are not aloneI’ve been debating with myself for some time whether or not I should write this. I’ll get to the reasons for that in a bit but first, for right now, I need to tell you this: you are not alone.

I am a 39 year old with Autism Spectrum Disorder (formerly Aspergers) and I have two children, one with autism and one without. I have a good job, I take a nice walk every day and I help a lot of people around the world but you know what? Sometimes I still feel completely worthless. Sometimes I still feel totally alone.

The truth is that we all feel this way sometimes. For those of us with autism or really, any other special needs, this feeling comes far more often. Sometimes we feel like this way more often than we feel good. I know I used to. I wasn’t always a grown up with a family and a job. I was a child with autism too and I felt so very alone then. I felt like I wasn’t nor would I ever be valuable to anyone. I felt like the world wouldn’t even notice if I was gone.

I still feel like that sometimes. I felt like that just the other day. As I sat there I thought… I’m just going to tell the world I’m done. I tried, I did my best but I failed. I gave it my best shot but I still feel worthless. And as I sat there, staring at my television that was off, I thought to myself, “I don’t even have anyone to talk to about this.”

Like every other day when that happens, I wanted to tell the world I was giving up. I was done. But like every other day, I thought to myself, no, I can’t do that. So I went to bed.

Here’s the thing, I have talked to hundreds, if not thousands of children with autism who have felt this exact same way. They’ve told me the exact same things. For the hours and hours I’d talk with each and every one of them, the most reassuring thing for each and every one of them, the one common denominator between them all… was me. I was the one that helped them to see that they weren’t alone. Perhaps I couldn’t convince them that they weren’t worthless, just as no one can convince me when I feel that way, but I could show them that they weren’t alone. All I had to do was be there.

Here I am, right now, to tell you that you are not alone. I started this big thing where I have this opportunity to help all these kids and the world praises me for it, often far too much. I’ve been in the news and on television and the radio and I am given this wonderful opportunity to help kids see that they’re not alone.

So why do I continue to have these days where I feel totally worthless?

Now I’m back to where I started, debating with myself over whether or not I should ever even write this, should I hit the publish button? Will I let down everyone that looks up to me? Will I disappoint all those kids who think that I’m some symbol of positivity for them? Will people look at me differently? Will people judge me as silly or foolish or even selfish for having done all this and still feeling so down?

But then I thought back to all those kids I’ve helped. They didn’t feel alone anymore because they came to me and we talked. But what about all those kids that don’t come to me? They’re still out there, feeling worthless and feeling alone. What if they’re sitting there, staring at their off television, feeling like there’s no one they can talk to? Debating on whether or not to tell the world “I’m done” just as I do on those days.

I’ve decided the message is more important than what anyone else might think. I’ve decided that… as much as this is about me, it’s not about me. I’ve decided that I have nothing to be ashamed of and I have nothing to hide. I should not be afraid to admit that it’s hard sometimes. Really really hard.

I can’t explain to anyone why I feel that way sometimes. I just do. I can’t answer people’s questions nor can I rationalize it when it happens. I feel stupid and guilty and selfish and worthless and alone all at the same time and it takes absolutely everything out of me when it happens.

I have autism, I have days where I feel worthless and alone and I am writing this to tell you that if you feel this way too, you are not alone. It doesn’t have to make sense. You don’t have to explain to anyone why you feel that way. No one should ever try to make you feel guilty for it.

I am a grown autistic man with wonderful kids, a good job and I can say, completely without ego or bravado, that I have changed the world for the better, at least for some people and still, to this day, I still sometimes feel completely worthless and alone.

You don’t owe anyone anything, not even an explanation for your feelings. It doesn’t have to make sense to them or even to you. You don’t have to feel guilty or ashamed about it.

Please believe me. You are not worthless and you are absolutely not alone. 

And if you don’t believe me now, come back and read this again tomorrow.

I’ll still be here.

We both will be.

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What the BBC failed to mention in their “Minecraft can help children with autism” story

The BBC has released a news story that says that Minecraft can help children with autism. This is wonderful news as it’s something that I’ve not only said for years but have actually proven thousands of times over with my Autcraft server. I’ve been very eager for the rest of the autism community and science to catch up.

It’s incredible watching a child visit us for the first time, type randomness into chat, spam, use all capital letters, get very upset over and over again and demand that everyone give them everything… and then to see them transition over time into a polite and articulate young player that is eager to share, help other new players and even remind other players not to spam or type in “all caps.” I see this happen with children over and over again. Their spelling improves, their creativity improves and most of all, their social abilities improve to the point where they’re not just making friends on the server but at school now too.

Minecraft itself offers many benefits even without the social play. In single player mode where you play by yourself, you still have the opportunity to expand your creativity, your artistic prowess and even to some extent, your social strengths as you take what you learn with you elsewhere and find other people that share the game and start up a conversation. Kids even get hooked on Minecraft videos on YouTube where they can see others playing together and learn more there.

There is, however, one real danger which the BBC article never addresses.

Children with autism, like all other children, will eventually want to play Minecraft with other children. It’s only natural. However, unlike other children, they’re going to struggle with communication skills, social cues and most of all, emotional control. When a child ventures out to a random Minecraft server and is killed, or their base is destroyed or someone says something mean to them, it can be heart breaking. For a child with autism, it can be emotionally devastating. Rage ensues, self confidence is destroyed and depression sets in. And it can happen in the blink of an eye.

AutismFather AutcraftWhen I started Autcraft in 2013, it was done so in response to hundreds of parents seeking each other out in hopes that their autistic children could play together because they were at a loss as to how to help their children from being bullied on every server they tried to play on. Unmonitored servers run rampant with bullies, trolls and griefers. Any child that stands out as simply being different becomes the ultimate target for hate. This can be devastating for any child and much more so for a child with autism as they feel like they were cheated in life, they are cursed and worse… that they should just die.

In fact, I’ve heard from some parents that their children, some as young as 6 or 7, have been told by bullies on Minecraft servers that their parents never wanted a kid with autism and so, if they love their parents, they should just kill themselves. They tell these children that they’re dragging down the rest of the human race and if they really wanted to do something useful, they should just commit suicide. Can you imagine someone telling a 6 year old child something like this?

The BBC article is bright and cheery and encouraging to so many parents, especially those that saw Minecraft as just an obsession or an annoyance and I’m not trying to shatter that feeling, honest. I will always be the first and loudest to sing the praises of Minecraft and it’s benefits on kids with autism but I will also always do so with a word of caution… safety is the key.

Your child must play in a safe environment otherwise the benefits of the game will quickly be replaced with the perils of bullying and hate. If you are going to let your autistic children play Minecraft with others, than consider the following:

  • Play on an autism friendly server, preferably one run by an autism organization or someone with autism themselves.
  • Play with your children. Be involved. Buy a second account and play on a second computer and join in. If you aren’t teaching your children proper behavior online then someone else is.
  • Enforce frequent breaks to ensure that emotions don’t build up over time and if emotions do build up, encourage breaks to calm down. Rage at the keyboard only ensures that the other players will single you out as a target from that point on.
  • Moderation above all else. Even the nicest players that are on 20 hours a day can start to become aggravated more easily and others can become more aggravated with you more easily as well if you’re always there. Plus, no one should be on that much. Minecraft is great but only when combined with other activities, like playing outside.
  • Set goals before playing. Start with solo goals such as finding X amount of diamonds or iron. Finding X amount of biomes. Getting a barn built. Things like that. As you branch out more, set more social goals such as saying “Hi” to at least 5 players or sharing your items at least once with some other player. Give your child something to focus on doing that they can then continue to do after without thinking about it.

On Autcraft, we always encourage the parents/guardians to play along with their children. We often set up community events and encourage group activities. We do not tolerate bullying or swearing or rudeness of any kind but we don’t just ban a person for it either. We take the time to explain to them what was wrong about what they did and how that could affect others and what they could do better.  Not many servers do these things.

What I’m trying to say is, not all Minecraft servers are made equal. If you just throw your hands up and say “I don’t get it”,  then your child is left to try to get it on their own and I would rather help you now than have them join my server later and end up talking to them for hours about how they wish to commit suicide due to the bullying. And believe me, I’ve done that a lot already with so many kids already.

When I started Autcraft in 2013, it was done so in response to hundreds of parents… within 48 hours, I received over 750 emails. 2 years later, we have approximately 6000 names on our list. That’s how bad the bullying is. That’s how very real the dangers are.

If you would like to support the Autcraft server, please visit our Patreon page where you can not only help us but also help those thousands of children by ensuring that they continue to have a safe place to play: https://www.patreon.com/autismfather

Have fun with Minecraft and the learning and growing and progress will come. But only so long as it stays fun.

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This is why I see children with autism very differently than everyone else

When I started Autcraft, I did so to help out the parents on social media that cried out for someplace that their autistic children could play together without the fear of bullying or torment. On June 23rd, I told a small number of those parent and within two days, I received over 750 emails.

That was when I realized just how big this bullying problem really is.

Since then, Autcraft has kept thousands of children safe from bullies. But that’s not all. That’s just the start.

Children came to the server shy, scared and unsure of what to expect. Many didn’t speak in public chat for quite some time. You could say that it went as most people would expect of children that struggle with communication and social structures. Anxiety, fear and shyness were the foundation that most new players started their experience on the server with.

What happened from there is truly amazing.

The players opened up to each other. They supported each other, they shared with each other, praised each other, encouraged each other and lifted each other higher. They did these things because they knew that there would be no one there to push them back down again.

no fearFor the first time in their lives, they were free from the burden of fear. No longer afraid to be bullied or judged or embarrassed or even to fail, these kids felt safe enough to share who they are, what they like, what they think and they even felt safe enough to make mistakes. They weren’t afraid to spell things wrong or to say the wrong thing. They weren’t afraid to admit that they were interested in things that people elsewhere might tease them for.

As they spoke up more and more, their reading and writing improved, manners improved, their control over their emotions improved, they worked together to solve problems and learned from each other… the progress that they made baffled their therapists.

Many people credit me for this as I am the creator of the server but the truth is that there are many factors to consider.

Anonymity has always played a big part in how people behave online. But for these kids with autism, it isn’t the biggest contributor to their success. In fact, for most that have played on servers prior to Autcraft, their fears only grew. Constant bullying, frustrations and rage often meant that they couldn’t even participate much less find any enjoyment. This is why their parents reached out in the first place. It’s why Autcraft was created. Their anonymity did not help them there.

However on Autcraft, that same anonymity does help. In the game, they are an avatar. That’s it. They don’t have to think about the their body language, facial expressions, any fidgeting they might do or people making noises around them. In the game, they’re a collection of pixels as are the people they’re talking to. There is nothing to focus on nor anything to distract them. The social aspect is narrowed down and streamlined.

The second biggest factor is that I created the server based on a foundation of communication. Anyone caught doing anything wrong will be spoken too. We explain what they did wrong, why it’s wrong and better alternatives. Children are encouraged to confess so that things can be fixed and moved on from. They learn that we don’t get mad and that they don’t have to be afraid of us. They learn that we understand them and if not, that we want to. They become comfortable talking to us because of that understanding and they learn that being open and honest from the start is the best way to avoid having things get worse later. They are no longer afraid of making us angry, they are no longer afraid that they’ll be punished and they are no longer afraid to admit that they’ve been wrong.

So what is the biggest factor towards the success of all of these great kids? Themselves and the community that they’ve created. This community gets stronger and stronger all the time and it’s all in how they treat and support each other. Once the fear is gone and they start working together, nothing can stop them.

Once they are free to share their interests, they find other children that share those interests. No longer being afraid means that they don’t feel like they have to fake their interests to either hide or to seem like a desirable friend to others. No matter how much they think others might find their interests odd, there is almost always someone that also has that very same interest. Once they find each other, they teach each other new things and share new things and really start to grow and progress together.

They aren’t being taught how to read and write, they are actively trying to get better at it on their own and in their own way. They have a desire to do it because it excites them, because it makes things better for them. Before the server, it seemed like people were trying to force them to learn things they just didn’t understand.

I’ve seen autistic children talk for the first time ever after playing on my server. I’ve seen countless children make friends for the first time ever after being on my server. I’ve written letters of reference for children that have gone off to get their first jobs after being on my server. I’ve seen children become role models and leaders!

All of this and so much more and it’s because they’re not afraid. That’s it. That’s all it is. They aren’t afraid of what a bully might say or do. They aren’t afraid of being teased for who they are or what they like. They aren’t afraid of being embarrassed for saying or doing something wrong. They aren’t afraid to make a mistake.

When most people think of children with autism or even when they talk to children with autism, the child they think they see before them isn’t the true child. The person they’re talking to is a collection of fears and anxieties. The child may even simply be doing what they think you want them to do rather than what they’d do naturally. They present to you a facade that hides the real child deep inside. The fear of what you think of them, of how you will judge them and of all the ways in which they might do something wrong… these fears are preventing you from talking to the true child hidden within.

On Autcraft, within their community of peers, friends, supporters, brothers, sisters, in that place where these kids feel safest of all is where I get to see them for who they really are. They are strong, they are proud, they are funny and they are brilliant.

If you want to see real progress, real growth, real education and real happiness, you must remove the fear. If you want to see a child for whom they truly are, you must remove their fear. If you want to be you… you must not be afraid.

When you can strip away that fear, whether you overcome it or push it aside, when fear is no longer holding you back, you stand taller and you feel stronger. When you can do that, you find people that will support you, encourage you, be your friend and be a part of your team.

No matter your race, gender, sexuality, religion, political views or anything else, whether you have autism or not, no matter who you are or where you are in life… when you remove the fear from your life, you’ll find people that will join you and together, anything is possible.

Without fear, anything is possible.

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