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How I went from a very shy and private autistic to a very outspoken and public autistic

Something truly bizarre happened last night. While on the phone with my mother, I found myself saying the following:

“So today I was in a news article on the largest news site in Australia, my book publisher emailed me to say ‘You must be busier than ever! Take all the time you need.’, a television show producer asked me to be on her show and an expo convention asked me to exhibit at their convention this fall.”

How did this happen? What’s happened to me?

hide computerI am a guy with Aspergers, I have two sons, one with autism and one without. I work from home, I like to go to the little neighborhood park across the street and I love to play video games, especially when I can do these things with my kids. I have less than no money, I have lots of stress and I’m over weight. I’m like the peace and quiet, I’m very awkward around other people and would gladly not talk to anyone at all if given that as an option.

Two years ago, I started what I thought would be a quiet little Minecraft server with maybe a handful of people on it. My way of helping out some parents that were in search of other parents on social media so that their autistic children could play together in peace. I just wanted to help. No one had to know.

No one had to know.

It took less than an hour of telling those parents about it before I realized that this wasn’t going to be a quiet little peaceful Minecraft server. Less than 2 days later, I had over 750 emails requesting to join.

Still though, we continued along relatively quietly. Word of mouth spread like wildfire bringing us far more players than I ever dreamed imaginable but outside of the autism community, it was still very much our little hidden secret. Autism parents thanked me, told me how great it was… it was nice.

At the end of 2014, 1.5 years in, all of that changed. First BuzzFeed found us and then CHCH television. From the better part of December and January, I suddenly found myself in the middle of my “15 minutes of fame.” And it was scary.

I like to think I did alright, being on television and answering hours and hours of questions. But that was not me. That’s not why I started the server and it’s most certainly not anything I had ever dreamed of doing nor did I want to. I’m a quiet and shy guy. I like to keep to myself. I like to not draw attention to myself. I kept thinking… no one had to know.

So here we are, June 2015 and I find myself with a book publisher wanting me to write a book, television producers phoning me and conventions wanting me to make appearances. A shy, quiet, wanting to be at home on the couch with an X-Box controller dad with autism who wonders to himself… what ever happened to “no one has to know?”

So what happened?

Somewhere along the way I sort of snapped. I was exhausted and I had been talking to suicidal children on the server far too often and it hit me… the server has done better than anyone imagined but it did so due to how bad the bullying of autistic Minecraft players really is. I realized then that this wasn’t a story about success but rather a story about tragedy.

If my mission was to give those children with autism a safe place in the beginning, in that instant, it morphed into a mission to both make people aware and to put an end to the bullying.

I created “A Plea to the Minecraft Community” and have done so for two years in a row to help stop the bullying and I found myself pleading with the cameras and the microphones and the journalists to help me tell the world just how bad it really is.

I still didn’t like the spotlight, I still cringed every time the phone rang or I was asked to send them my Skype information but I did it anyway. I had to do it. It was me they wanted to talk to. They wanted to know what kind of person would start a server like that, devote the time like that, spend many sleepless nights talking to players like that… the story they wanted was as much about me as it was the actual server and I knew, deep down I knew that I haven’t made any sort of difference at all yet. They want to write about the difference the server makes? The difference I make? I want them to write about the difference I want them to help me make. I want them to write about the real problem.

What happened? I found a purpose. A reason to put my fears and shyness and my autistic tendencies aside and do it anyway because those kids (and some adults too) that I talk to on the server every day are worth it.

Last night, I discovered that I have another reason. One I’ve sort of known about all along but it never really hit me until right after I said that one very poignant sentence and more importantly, to whom I had said it.

I hang up my fears and desires to sit by myself and not answer the phone and I do it for my mother. As corny as that sounds. Growing up with autism and not knowing it, I struggled. I know I made her proud all the same but still, I struggled. It was hard for me and more often than not, and I mean, way more often, I felt like a failure. More so, I felt like I was letting her down. Her only son. What a let down I must have been.

So now I have a chance to make her proud. I have a chance to make a difference and I do so using all the wisdom and heart that she raised me with. I still struggle and I still feel like a failure a lot of times with no money and tons of stress but at the same time… book publishers are phoning me, television producers, journalists, convention organizers… me! I’m still just a dad, in his living room holding a video game controller in his hands, praying the phone doesn’t ring so that I won’t be forced to have to talk to someone.

And yet these people are phoning me and they’re phoning for all the right reasons. I’m not in the news because autistics have it hard or need services or are shut-ins… which I totally am. No, they want to hear about the wonderful things I’ve been doing all this time. All this time that I kept thinking ‘no one needs to know’.

Now I realize… the world does need to know. For those children that come to me for safety. Those children need to know. Their parents need to know. People need to know about them, how great they are and how unsafe they still are. How bad the bullying still is out there. The world needs to know.

And my mother, she needs to know. For all she’s done to raise me this way, to help me get this far and give me the tools to accomplish these things, I put aside my desires to say no to interviews and make myself do them. I want her to be a proud mother. I want her to be proud of her son. She deserves that much.

I know now what happened and even though I’ll likely never get used to it and always feel awkward about it, I now realize one thing… people need to know.

Given the right motivation, given the right reasons… a life time of being a struggling, shy and private autistic was thrown to the side and I found myself becoming a very outspoken and public autistic. A man with purpose. Given the right motivations, I believe any one else could do the same as well.

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Deconstructing the self-righteous – when parents try to kill their children

deconstructI keep seeing some disturbing responses to the Kelli Stapleton case and I thought I’d address a couple of them today… a sort of, let’s clear the air, type of post.

Without wasting too much time, let’s get right into it.

Copycat Crimes

In a recent statement from ASAN (Autistic Self Advocacy Network), they condemned Dr. Phil’s interviews with Kelli Stapleton stating “We see a pattern of copycat crimes whenever there is a well-publicized case of a parent murdering, or attempting to murder, their disabled child … Dr. Phil had an opportunity to shut down this cycle of violence, and instead he chose to perpetuate it, as loudly and widely as possible.

I have long seen many people get adamantly upset any time anything to do with autism is portrayed negatively in the media. Whether it’s adults that still behave as children, needing parenting for life or children behaving violently, no matter the situation, if it “makes us look bad”, the media is the bad guy.

I wonder though, where were these people when mothers were murdering their children that didn’t have autism? How come no one screamed about the risk of copycat crimes when these mothers killed their children?

I don’t know if you noticed or not but those stories are from 2014 alone and that’s not nearly all of them. Where’s the outrage? Why is there no one calling for the end of the journalists that reported these stories?

In our efforts to protect children with autism, do we now not care about any child that doesn’t?

There are more of these murders every year than there are months on the calendar but one murder attempt on a child with autism in the last year and suddenly we fear copycat crimes? No, we fear our own public image being damaged, nothing more.

The truth is that media attention is good. Whether your stance is that there should be more services (this will convince people of that) or if your stance is that she’s a monster for trying to kill her child (this will convince people of that too), media attention is not what leads to another tragedy like this, doing nothing is.

We must focus on figuring out how to prevent all of these stories from ever happening again. And crossing our fingers and hoping that no one becomes a copycat is simply not going to do it.

How can anyone sit there, in their big self righteous chair, and claim that a “copycat crime” is our biggest concern? How can anyone honestly sit there and try to tell me that the last mother to attempt to murder their own child did it only because they saw someone else do it on the news and thought “hey, I can do that!”

No, either

  • A – they are totally out of their minds, in which case, it was just going to happen no matter what or
  • B – they hit rock bottom and saw no other way out and don’t care in the slightest what any other mother has ever done. They just don’t.

Copycat crimes are not what this is about. It never was.

If you’re really worried about this happening again, let’s talk about real ways to prevent this from ever happening again.

Which leads me to…

Murder is never OK

I keep hearing this and as a statement on it’s own, I agree. However, this statement is a precursor to the rest of the intended message which is “now is not the time to discuss a lack of services or support or funding.”

I have one simple question then, when is the right time? During the lull between the last attempted murder and the next one? Or after the next one? Or the one after that? Do we look around and go “What? Too soon?”

Let me put it another way, if we never get around to discussing how we can lend help to the next parent that is reaching the end of their rope, for what ever reason, are we partially to blame? Well, no, I suppose not since “murder is never OK”, right? We can wash our hands of all blame.

I’ve seen it go even further than that. I’ve witnessed good people be verbally and brutally torn apart for so much as suggesting that they think events could have played out differently if the support had been there. I’ve seen people be accused of the most horrid and vile things simply for suggesting that they have it rough too and understand how someone could reach the point of murder/suicide.

Now, let me be clear, no one ever said they condone it or would ever do it themselves. They only said that they’ve been depressed and felt helpless and felt alone and felt abandoned and they understand what that murderous mother felt. Not that they’d do it too, but that they take the time for understanding… that they have shared a similar experience at least in leading up to the crime.

When a mother (or father) comes to you saying how hard they have it, how difficult their lives are, how no one is there to help, how no one seems to care, how there is no money, how there are no services… and when they say that they understand how hard it must have been for the last mother that was in the news, if you take that as an opportunity to beat that parent down with your words, to bully and chastise, to degrade and humiliate and to dehumanize that parent with all of your might…

What do you do when the parent you bully is the next parent you read about in the news? What do you do when you realize that you pushed them to it?

You do NOT get to throw your hands in the air and say “don’t blame me, murder is never OK.” No, you are not without guilt here. You are in fact a part of the problem. In fact, you’re worse than the lack of support, you’re the opposite of support. And if that mother that you’re beating on is the next one we read about in a headline, I will never ever forgive you. I will never ever let anyone forget what you had done and I will never ever stop reminding you of exactly who is to blame.

You know what? You’re right, murder is never OK. But that doesn’t mean we forsake our humanity and it certainly doesn’t give you a right to forsake yours.

Yes. A parent that tries to kill their child is a monster. And you’re right, murder is never OK. On that, we’ve never disagreed. It’s what comes next that you need to figure out with the rest of us.

Now, either learn to start helping people that need help or get the hell out of the way of the people that will.

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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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The reason we cry when someone is nice to an autistic child

kiss cheeseburgerRecently a photo of a girl kissing a cheeseburger went around the internet like a lightning bolt, shared by millions and adored. I won’t get into the whole story but you can read about it here.

Most people loved the story while some others questioned, why is it that we cry just because someone is nice to an autistic child?

Stripping away our desire to have this happen with our own children, it’s a fair question. No one cries when someone does this for just any child. No one even makes it into a story and it certainly doesn’t go viral.

Is it because we’re supposed to feel pity or sorrow for autistic children? Is it because autistic children are poor little defenseless lambs in comparison? Is it because autistic children are viewed as the underdog and thus needing special treatment and we just love to hear that they get it?

Or is it because it simply does not happen? At least to us.

When you have a child with autism, you feel the stares as your child behaves in ways that others may not understand. We feel the judgments as people think we’re terrible parents while our child suffers a meltdown.

More so than that, we know full well just how cold people can really be when we ask for something as simple as an uncut burger and they huff, roll their eyes, refuse to appease us or do appease us but do it with an obvious amount of disdain for what we’re putting them through.

It’s because we know what it’s like to have to just up and leave a nice lunch out because someone refused to simply do something we needed and our child erupted into a complete and uncontrollable meltdown.

It’s because we know just how powerless we are against bitter, unhelpful and even rude people who simply do not care about you or your child.

So when we see someone, not just someone but their manager and other co-workers and an actual group of people who go out of their way to not just be understanding but to do something special, no matter how small, or how big, but to just do something they never had to do at all… it’s a tear jerker. It’s a shot to the gut… because we want so bad for someone, anyone to just be kind enough to do that to our own child. Just once.

Because trying and trying and trying to find someone who’d simply show us and our children just a little bit of compassion… we keep coming up empty.

And in this one photo, this one story, this one simple act… we find it.

In that instant, we have renewed faith. In others. In ourselves, that one day we’ll find someone like that too and should never give up. And most of all, in humanity.

There are kind people out there. People who won’t ask me to leave. People who won’t judge me. People who won’t grunt as I make a small request of them on behalf of my child. People who will not just accept that my child is there but actually make an attempt to make my child happy… no matter how silly it may seem.

There are people out there, who care.

Today, right now, in this world, that’s a nice thought. It’s comforting. There’s hope.

They’re happy tears.

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I think I speak for everyone when I say that I speak only for myself

If you read blog posts or news articles or random bits and pieces of things from people, do you honestly assume that the person is speaking on behalf of all those within their community? How about the world?

Chances are you haven’t really put much thought into it at all. You just read what someone says and go about your day. As it should be.

A funny thing happens though, when you are one of the people writing some of the same (or similar) things that other people are writing… you start getting defensive. As if somehow, in some way, those other writers are writing on your behalf and they’re not getting your message right at all.

It all starts to spiral quickly once one person starts naming another person and it gets ugly fast.

But for the most part, I think anyway, most readers don’t care about any of that and most never assume that one person’s writing is indicative of the way everyone thinks or what their experiences have been. I’m not saying they definitely know better and always think that each story is unique but rather that most people don’t even think about it at all.

Most people enjoy what a writer says and comes back to read more another time or moves on to the next thing they read or they go back to stopping their kids from fighting.

I think I speak for everyone when I say that I speak only for myselfIf you’re a writer/reader, try not to take it so personally when someone’s opinion is different from your own or if they’ve had conflicting experiences from your own. If it does seem that some other writer is attempting to speak for you, let it slide. You know they don’t. The reader knows they can’t.

If you’re a reader and not a writer and you’ve never really given it much thought, let me put your mind at ease right now. What I write, no matter what it is, is based on my own opinions and experiences and I speak for no one else but myself.

And if you read something from someone that does claim to be speaking on behalf of others, keep in mind that they can’t possibly do that. Don’t get mad at them, but just keep it in mind as you read. Their experiences and opinions are valid too, even if they do have an enlarged ego.

Sometimes they might even have facts and figures to back up what they say with such claims as “the majority of” and so forth. If you think about it… “most” people still isn’t everyone. Meaning, they still can’t speak for everyone.

Most of all, if you do see a writer naming another writer to discredit them or make an argument, keep an open mind that these are two passionate people, both with valid yet conflicting opinions. And try to filter out the ugliness as best you can. Chances are, they’re both not wrong. They just might not be able to see that at the time.

You really can believe everything you read, if you remember to keep in mind the source. They are human too. They are just one person and that’s all that they can speak for.

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