Tag Archives | Autism

10 things I’ve learned from running a Minecraft server for children with autism

It wasn’t that long ago that I registered a domain name, opened up a shiny new Facebook page and Twitter account and announced to the world that I had started a Minecraft server just for children with autism and their families. Now, one year later, I can honestly say that I’ve changed a lot. I’ve changed because I’ve learned a lot. Some of it good, some of it not so much.

This is what I’ve learned in 1 year of running a Minecraft server for children with autism.

Bullying1. Bullying is far worse than anyone realizes

In one year, Autcraft‘s list of approved players (whitelist) is now over 4300. From a very humble Facebook post to a few hundred people, word spread like wildfire. This happened because parents had finally found a place for their children to play where they wouldn’t be bullied.

It’s not just the quantity but also the quality. Most kids are used to the hitting, kicking and teasing. On Minecraft servers, the bullying usually involves killing them, destroying their stuff and stealing everything they have to the point of making the game unplayable.

The worst though, is that these kids, some as young as 5 or 6, are told that they should be killed or never have been born because they are dragging down the human race. They’re told they’re less than worthless, they’re a burden on everyone, even their own parents. They’re told that, if they care about people, if they care about their parents, they should commit suicide.

Next time someone talks to you about having autism and being bullied, don’t respond with “well, everyone is bullied” because there is no comparison.

2. Being autistic makes you a target

Three weeks after opening our doors, Autcraft became the topic of several troll/hacker forums including the infamous 4chan website. A victim of our own success, these places heard of us quickly and immediately determined we’d be an “easy target” to “make a bunch of autistic kids cry.”

Since then, we receive applications from troll/hacker groups at least 2-3 times a month and our server is DDOS attacked at least once a week.

3. Autistic is to ‘retard’ as Autcraft is to…

People are using ‘autistic’ in the place of ‘retard’ in their lame attempts at insulting others but I didn’t realize just how much until I started finding Autcraft being used as the insult across the Minecraft community. For example, when two people are insulting each other, one would suggest that the other belongs on, or should go back to, Autcraft.

If we aren’t targeted for attack, we’re used as an attack on others.

calm down4. Autistic children are mastering a technique that most people lack

I have seen many autistic children on our server get so mad that others can’t help but change ‘rage’ from a noun to a verb. “He’s raging.” When a child with autism gets to that point, there is very little self control. The worst of the worst behavior that they are capable of can and often does present itself.

However, many of these children, most even, have this remarkable ability to stop, recognize this is happening and remove themself from the situation and return after calming down.

I can only assume that this is due to the very hard and diligent work of their parents and care givers (and even some handy apps) but this is something I am witness to very often and always amazed by. While most people don’t ‘rage’ quite as extremely as some of these autistic children do, they still prolong the issue and hold grudges for far longer than they probably should.

A secondary benefit to this is that they are able to recognize this in other autistic children as well and often come to quick resolutions after apologizing and forgiving each other upon the child’s return from calming down.

5. The kindest community in all of Minecraft

Ok, that’s a bit of a bold statement to make and I can’t really confirm it since I haven’t been on every server but I can tell you that every guest we’ve had from YouTube celebrities, Minecraft news sites, other server owners, teachers and more have all told me that they received the biggest and kindest welcome when they joined Autcraft and continued to experience the friendliest atmosphere they’ve ever had while child after child offers to give them tours, help them find a place to build, help them build, give them advice and even just offering to be their friends.

This is surprising to most people as they assume a community comprised of socially awkward or special needs children couldn’t possibly be that well natured… that friendly. But it is. It really is.

Equality vs Equity6. Equality vs fairness

One of the most famous quotes in the autism community is “If you’ve met one autistic, you’ve met one autistic” which is another way of saying, each autistic is different with different characteristics, symptoms of autism, personalities, strengths and weaknesses.

On other Minecraft servers, rules are set in stone and everyone that visits that server must abide them. With Autcraft, while we do have a set list of rules, each child is essentially treated quite differently.

While this sometimes leads to some being upset that “it’s not fair” that two children are not treated equal, I have found that for 2 very different children to learn a new task, complete a task and have an equal experience, it is imperative that those two children not be treated equally in the beginning.

You treat them fairly, based on their strengths and weaknesses such that both children have an equal opportunity and that’s when everyone does well.

Positive Reinforcement7. Encouragement vs Discouragement

When children do bad things on a Minecraft server, the instinct is to jail or ban them. When they say bad things, they are muted.

On Autcraft, these things happen very rarely despite the fact that many of the players are children that have more communication impairments, less emotional control and more learned negative behaviours than even their own parents may realize.

The reason these punishments happen so rarely is quite simple: we encourage them to do better.

We reward players that show great improvement from Sunday to Sunday with Player of the Week. We take the players that show respect, maturity and a need to be a helpful contributor to the community and reward them with the added responsibility of being a Helper.

We offer many great rewards for players who simply do their best or make improvements over how they were previously.

Children want your attention. You can either wait for them to do something wrong to get it or give them opportunities to make you proud.

Communication is key8. Communication is key

When a player does act out, rather than mute or jail them, we ask them if they’re OK.

Nine times out of ten, we’re told about something happening in their life that is troubling them. We talk about it and they either feel better or don’t but the ‘acting out’ stops.

Communication is not limited to talking. For some we contact the parents with something their child did or said, sometimes it’s with concerns about how they’re feeling and sometimes it’s to tell them about the really great thing their child did.

Sometimes we have children on that are very young or unable to read/write the chat, in which case we set up a system with the parent such that if we move their child to a special room, that’s their cue to get mom or dad so that we can relay information to them, they tell their child and then they continue on playing.

Open communication, in what ever form we can achieve it, at all times, makes the whole experience better for everyone.

Be Yourself9. Progress is made when you’re free to be yourself

We’ve received so many emails from parents saying that their children are making better progress now than with years of therapy. Others are making friends for the first time ever. Some are learning to read and write when it seemed nearly impossible before.

I believe that the reason for this is simple: the children are unafraid to just be themselves.

When you remove the fear of bullying, embarrassment and the shackles of self-doubt, these children open up and do the things they love. They do it in the open and for all to see and others rejoice in it and encourage that. That’s when real progress is made.

They’re no longer afraid to spell something wrong, they’re no longer afraid to admit they like something they feel like maybe someone else would think they shouldn’t, they’re no longer afraid to speak up and say what is on their mind.

This is when real education happens. This is where real power comes from.  This is how real progress is made.

respect10. Respect

Many of these children are fighting battles that most people can’t imagine. For some it’s constant bullying while others have unaccepting parents. For some it’s not having any friends or the struggles that come with being unable to communicate effectively or it’s the blinding rage that seems to bubble up all too often despite their best efforts or maybe it’s other things like also having ADHD, Tourettes, seizures or any other number of other disorders or problems.

When I talk to many of these children, they are going through more battles than most adults would be capable of handling. We often joke that life was so much easier as a child than as an adult but for many of these kids, that simply is not true.

Talk to them with respect, make your best efforts to listen and to understand and never dismiss their struggles.

They will respect you when you respect them and that’s when you’ll have an opportunity to truly help each other.

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Dear news media, this is how you fail the autism community so badly

The autism community’s biggest enemy, by far, is the news media. How so? Well, first of all they report the “terror” of autism, the “suffering” of autism. Secondly, they take any report that says “We put X and Y in a room together and found a Z% correlation” and create sensationally outrageous headlines such as “Z is caused by X!!!! Your children are doomed!!”

If you are not a part of the autism community, I can understand how this must appear to be an over exaggeration. If you are in the autism community, thank you for recognizing that it is, in fact, not an over exaggeration.

To give you two prime examples of how the news media agencies fail us, we only need look at what is happening this week.

“Significant” Link

Study: ‘Significant’ statistical link between mass murder and autism, brain injury” - http://www.washingtonpost.com/news/morning-mix/wp/2014/05/21/study-finds-significant-portion-of-mass-murderers-and-serial-killers-had-neurological-disorders-including-autism/

This article names all sorts of serial killers that you either hate or will hate after reading about them, names like Adam Lanza, Seung Hui Cho, Jared Loughner and Jeffrey Dahmer. Having just come off the headline of “significant statistical link between mass murder and autism”… can’t you just feel that emotion taking over? 

Oh wait, we skipped this one minor paragraph tucked away in the middle somewhere that has little importance… it’s this one:

The researchers stressed the study is “clearly limited” by the “anecdotal and speculative” nature of some of the published accounts. Lead researcher Clare Allely, of the University of Glasgow, emphasized the study did not suggest those with autism or Asperger’s are more likely to commit murder. “We’re not saying people with autism will be serial killers,” Allely said, adding “it’s way too early to make any statement like that.”

Hey wait, that does seem important, doesn’t it?

To me, a more appropriate headline would have been “Anecdotal and speculative information researched on autism and mass murder finds it’s way too early to say people with autism will be serial killers”.

Well, maybe not, it’s a little long and granted, it doesn’t pull in the readership that “significant link!!!” will.

Now, in my own research, I discovered that the number of homicides in the US between 2000 – 2010 was 165,068. 

This week, one person with autism plans a murder and suddenly we’re having studies about there being a potential link? Where are the studies that say “hey, 165,000 murders were by people that had no disorder. Could be a significant link!”?

Bullying Autistics Leads to Murder

This second bit of news also bothers me on another level.

Santa Barbara Shooting Suspect Calls Loneliness ‘Darkest Hell’” - http://abcnews.go.com/US/santa-barbara-shooting-suspect-calls-loneliness-darkest-hell/story?id=23855994

In this article, they write

“Schifman said Rodger was diagnosed as being a high-functioning patient with Asperger syndrome and had faced bullying through much of his life as he had trouble making friends.”

Now, I talk to autistic children every single day and at least 2-5 of them each week that feel like committing suicide due to the amount of bullying they are subjected to.

There are literally hundreds of autistic children dying each year due to bullying.

Why?!!? Why are there 100′s of children committing suicide due to bullying each year and no one cares?

But 1 child plans to commit murder due to bullying and suddenly this is national coverage? And autism is a big part of the story?

This is heartless and devastating to those of us with autism, those of us in the autism community and to your audience in general.

Stop Hurting Us

Stop Hurting Us

You Are Hurting Us

Listen, I understand that you need to get enough ratings, you need enough of an audience to “rate” against your competition. But please stop!!

I am begging you, I’m am pleading with you and I am insisting that you stop making autism out to the bad guy.

We are not mass murderers any more than non-autistics. We are not suffering any more than anyone else with depression or bullying. We are not this evil force that you paint us out to be.

We are children, adults, parents, friends, neighbors… we are your brothers and sisters.

You need to understand, you are hurting us. You are causing the suffering that you report about by reporting the way you do. You have become the bullies and you are bullying us.

Stop the sensationalist headlines. Stop burying important facts. Stop singling us out of a crowd of thousands and saying we all must be like that one in the crowd. Stop making us that thing to be feared.

Stop hurting us. Please just stop hurting us.

If you can’t find it in your hearts to start helping us, at least, please, stop hurting us.

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When the strongest among us falls

Autism parents. As differing as autism children.

Some go so far as to separate them into labels such as ‘warrior’ or ‘victim’. Some call them ‘special people’ because God only gives ‘special children’ to those types. Others see them as bad parents that let their children ‘get away with stuff’ what they would never have let happen themselves.

We’re just people. Autism parents are people. Same strengths… same… weaknesses…

Earlier, my Facebook timeline began to repeat one name, over and over again. It was the name of a woman that I’ve met on Facebook. It was a woman that I’ve seen in the news. A woman that I’ve had the pleasure to talk to. She’s commented on this blog.

Before you read the news story that everyone was talking about, before you form any opinions on what you think may have happened or start to question what lead to this or anything else, I want you to consider this:

She was one of the strongest autism parents that I’ve met.

http://record-eagle.com/local/x312422563/Charges-loom-for-Benzie-woman-in-murder-suicide-attempt

Another autism parent on Facebook shared a similar link with the caption “I just don’t understand it.” but I do understand it.

Still, I can’t help but to think how fragile, not just life is, but our own self worth, our inner well being and more so than that, our strength to keep it all up.

When the strongest among us falls, how do the rest of us carry on?

The answer came to me, not once, but twice this week as I watched autism parents share their private phone numbers on a not very private Facebook wall so that anyone, it doesn’t matter who, can call them if ever they need someone to talk to.

Now, I don’t condone nor do I think I could ever forgive attempting to take Issy’s life as well (if everything did happen as the reports are saying they did). No matter how hard anything ever got, I could never do anything to hurt my boys.

But I do understand how dark it can get. The first time autism parents shared their phone numbers this week, it was for me.

So how do we carry on? Well, I think all of those incredible autism parents already have the answer: by being stronger than our strongest. And the only way that can happen is with numbers. 2 people are stronger than 1. With enough people, you can balance any weight.

A group at it’s weakest is still stronger than an individual at their strongest.
For an individual will tire eventually, no matter how strong they are.

Which brings me to the last words from the last post on her blog:

There is so much more to say.  I’m just too tired to write more.
All my love,
Kelli
http://thestatuswoe.wordpress.com/2013/09/03/when-a-power-player-takes-you-down/

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The Story of Luke – The autism movie you have to see

The Story of Luke is a movie that I’ve been following closely for some time. Even while they were filming, I was already a fan of their Facebook page and eager to see the end result. I’m very pleased to report, I was not disappointed.

Synopsis

95min. A comedy about Luke, a young man with autism who is on a quest for a job and a girlfriend. Starring Lou Taylor Pucci, Seth Green, Cary Elwes and Kristin Bauer.

The Story of LukeReview

The first thing the synopsis tells you is that it’s a comedy about Luke, which while true, is such a very small part of what this movie really is.

First of all, while it will make you actually laugh out loud in a few places, in others it’ll simply have you smiling and thinking “I totally get that.” While in other places, it will make you want to stand up and shout “You tell’em!!” and then shortly after have you crying your eyes out. And I’m a dad. I’m not supposed to cry. I did.

While this is the story of Luke, hense the title,  it’s also the story of those around him. Because in this film, even though almost everyone around him is “normal”, no one around him is really all that normal either. There’s the sometimes crazy, sometimes wise grandfather who even manages to be crazy and wise at the same time in some instances. There’s the depressed aunt, the midlife crisis uncle, the rebel son/cousin and then the doesn’t fit in with society daugther/cousin. There’s many more that Luke meets along the way as well.

I think the closest movie/story you could compare this to is Adam. I don’t know if you’ve seen that but it’s about a lonely man with Aspergers and his relationship with a girl. In Adam, the movie is very much about Adam, he’s always the focus. But it does give you a very real world glimpse into the life of a person with autism/Aspergers.

In The Story of Luke, while Luke is obviously the main focus, there’s so much more going on. His family evolves, his grandfather evolves, the people he starts to work with all evolve. His efforts, his honesty, his quirkiness and his mere presence makes the lives of those around him change. And it all feels very real. You never get the sense of there being a script or that someone had written this. It all feels so natural, as though it’s a true story.

One big difference I’d like to point out, between Adam and The Story of Luke is that, in Adam, it can be quite painful to watch because you envision your own child as Adam, later in life, living these struggles. It quite literally hurts to imagine your child growing up to be Adam and having a difficult life. It’s very well done in that sense. With Luke however, you never quite get that sense of your child being in his place. And it’s not a bad thing!

As a man on the autism spectrum myself and having a son with autism, I never once got the sense Luke was trying to be me or that my child could be Luke some day. I did have a few dozen “that’s just like my son!” moments though.

Luke stands apart and while very perfectly representing life on the spectrum, he never comes off as representing all autistics, only himself. And that’s quite powerful when you think about it. To relate to him, to see so many similarities and yet, seeing him as being his own man and not just a future version of your own child, is a feat not easily accomplished.

The movie is very much in your face with a lot of swear words, which are very cleverly done actually, very in your face boldness and off the wall terminology that will clearly make little sense to Luke but it’s never done to an extent that you feel it’s vulgar. Still though, it’s probably best to not have the little ones sit in to watch with you if you don’t want them hearing that language.

The movie truly is the story of Luke trying to be a man. Not just to “get a girlfriend” as in Adam but to walk out the door, get a job, get a girlfriend and, as his grandfather would say, “get his $hit together”.

I’ve watched The Story of Luke twice in one day and I still want to watch it over and over again because it’s just so well done. Each and every character is so perfectly portrayed and real. Luke is just so lovable, you really can’t help but want to be there, in the movie, to tell him how awesome he really is. Also, not many movies can shock me with what it says and then make me want to stand up and cheer at how the protagonist responds and then make me want to cry just a few scenes later but this movie does all that and more. And it always feels natural. Like I’m watching real life unfold in front of me.

The Story of Luke is not a movie to put in place of other movies about autism but it’s definitely a movie that you absolutely must include in your autism movie list. You’ll relate, you’ll learn, you’ll adore, laugh and cry.

I guess what I’m trying to say is, I highly recommend that you see this movie.

Awards

  • Audience Choice Award for Best Feature Film at the 2013 Omaha Film Festival
  • Best Film (shared with “Missed Connections“) AND the Audience Award for Best Narrative at the San Luis Obispo International Film Festival
  • Best Narrative Feature Award at Festivus Film Festival
  • Audience Award at SF Indie Fest  (The San Francisco Independent Film Festival)
  • People’s Choice Award for Best Film at The Saint Augustine Film Festival
  • Best Film, Best Actor (Lou Taylor Pucci), Best Director (Alonso Mayo) & Best Trailer at the Irvine International Film Festival
  • Audience Award at the Bahamas International Film Festival!
  • “American Indie Audience Award” from Fort Lauderdale International Film Festival
  • “Best Film” at the San Diego Film Festival

When/Where to see it

The Story of Luke comes out on April 5th in select theaters but it will also be available on iTunes as well.

Check out the trailer here: http://trailers.apple.com/trailers/independent/thestoryofluke/

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The yin and yang of parenting on the spectrum

We’re coming up on the one-month mark for a new ADHD medication for our seven-year-old son, who’s also on the autism spectrum. It’s always tricky to be objective about tracing results back to causes, but so far, the results are encouraging.

For the first time, he’s asking open-ended questions. Questions that indicate a curiosity about how things work, from a car engine to the mechanism behind a video exhibit at a museum. He’s been able to curtail some of his impulses – like doing the puzzle he just opened– when I announced it was bedtime.

The tattoo I got for my son and daughter works for my husband and me, too.

The tattoo I got for my son and daughter works for my husband and me, too.

It’s gratifying to see, not to mention a relief. After a bad experience with a different ADHD med last summer, the absence of negative

consequences is a positive in and of itself.

For me, though, it also provokes guilt. Because the only reason our son is on this medication is that his dad pushed for it.

Feeling burned by the first med, I resisted our doctor’s suggestions to try this one for almost six months. My husband didn’t oppose me, but gradually, after receiving input from school, he began his own low-key lobby. Finally, reluctantly, I agreed to try it.

And so far, it appears he was right and I was wrong. Thus the guilt. Did I deny our son six months of growth and progress because of my supermom proclivities? I’ll fix it/handle it/solve it myself. I don’t need any help from some drug.

This isn’t the first time my husband has been the ballast in parenting decisions. It goes way back to infancy, when we started part-time daycare. I felt like I should handle all the caregiving myself. That’s what a good mother does, after all. Even though I hated it and was going stir crazy at home all the time.  Mike took the reasonable approach. Let’s try it. It doesn’t have to be permanent.

Seven years, two kids and one sane mother on, it was by far the best decision for our family. Yet I still don’t know if I could have made that decision myself. So on this, my first post on Autism from a Father’s Point of View, I want to ask: What is it about dads? Is there something in the Y chromosome?  Is our dynamic reflected in your parental roles, too? And is it the balance that matters most, no matter who provides the yin and yang?

- Cari Noga is a writer in Michigan and mother to a son on the spectrum and a neurotypical daughter. You can read her blog here. In April she will publish Sparrow Migrations, a novel about a 12-year-old boy with autism who becomes obsessed with birds after witnessing the “Miracle on the Hudson.”

 

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