Connecting with a child that has autism – which is real? Face to face or virtual?

Talking with some of the parents that help to run Autcraft, we had an interesting discussion about how some professionals or “experts” still don’t see any value in video games because, from their perspective, they are not “real.” But what is real? Is it a face to face conversation? How about a conversation via the phone? Or a video call? How about two avatars that represent ourselves that are face to face, talking?

When an expert talks about what is real, they come from the traditional, textbook approach to therapy in which the only way to truly understand and assess a person is via physical observation… being face to face. And many times this is very true. I wouldn’t want anyone trying to diagnose my children with anything without having met them at least once.

They’re not entirely wrong in that, from a virtual perspective, which is the one I’m most accustomed to, I find that it’s easy to almost sort of forget that the person you’re talking to is a very real person. When a player is acting out on my Minecraft server or behaving inappropriately, it’s easy to lose patience with them or become frustrated with them, especially if it’s an ongoing, repetitive behavior. Really though, if we had a webcam on them or were in the room with them to see the innocent looking little boy or girl who’s not understanding what they’re doing or on the brink of crying… we would approach the situation quite differently. Perhaps our patience wouldn’t leave us so quickly. Perhaps we’d better perceive the behavior and thus, the cause and solution for it.

Still though, having been talking to and helping literally thousands of children with autism over the last couple of years, I’ve come to realize that there is a very real benefit to not being face to face with them. By removing the anxiety, fear and shyness that can come so easily to a child with autism when face to face with anyone, much less a stranger, you can finally get to what is truly real… the child.

All children, especially those with autism, will likely take a very long time (if ever) to finally open up to you and reveal their true selves. Finding a way through their fear or anxiety or even just their desire to please you by saying what you want to hear, it’s extremely difficult to have a child reveal their true personality. Some parents are actually still waiting for this to happen from their own children, so what hope does an “expert” have just by insisting that what’s real is simply, face to face.

Having a virtual conversation means not having to think about your body language, facial expressions, eye contact, fidgeting, what the other person’s body language or facial expressions might mean, you can take the time to choose your words carefully and also you feel more free to just say what’s on your mind because… well, as ironic as all of this is… it feels like it’s not real! If it doesn’t feel real to the child (no human there, no repercussions, no one will ever know), then there’s no reason not to do and say what ever is on your mind.

So sure, maybe the experts don’t see it as real and maybe those kids don’t really see it as real either but for me, the guy in the middle of it all, I welcome that because I can use that finally get to what is truly real… the child’s real self.

Why does Autcraft make such a huge difference in people’s lives if it’s just a game and not real to so many people?

lisa simpson friendshipWell, because we all know the value in having someone to talk to. Someone that you can be honest with, someone that makes you feel safe and someone that you know that you can be real with. You can share your fears, insecurities, talk about feeling suicidal or even, talk about the wonderful things in your life, the things that make you feel great that you fear people might tease you for… you can share as much or as little as you wish too because you are in a place where you don’t have to be face to face to feel safe. And video games, in my case, my Minecraft server, gives many of these kids exactly that. A not real environment where they feel more real than anywhere else in their lives.

So instead of trying to figure out what is and isn’t real, perhaps instead you should be asking which interpretation of real is most important to you.

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Helping you understand Sensory Processing Disorder (SPD)

I’ve had a lot of people ask me about Sensory Processing Disorder lately and that’s largely because most people, the average person, can’t really imagine what that’s like. A lot of it makes no sense to them. And I’ll get back to that point shortly but first, I thought I’d try to give you a few examples to maybe give you a better idea of what it’s like.

When you live in the city all year long and decide to go camping, like, real camping, in the woods with a tent, at some point in the night you’ll look up at the stars and realize that it’s quiet. Very quiet. Like, eerily quiet. That’s when it really sinks in just how loud the city really is. It’s still an abstract idea in the sense that you don’t suddenly become aware of every specific sound but nevertheless, you realize that city was loud! You hear things all the time! Humming appliances, buzzing lights, traffic, people talking, phones ringing, televisions and music on somewhere, planes flying over head… there’s just this big ball of noise all around you all the time and it’s not until it’s all taken away and you’re left with a tent and a night sky that it hits you…  it’s quiet.

danger noise hazard signOn a smaller scale, another example, you know how through out the day you’re going about your day, watching television, having dinner, taking a shower, doing homework… then late at night, you turn off the television and turn off the lights and head for bed and you hear it. The fridge. The motor just powered up. That thing was powering up and powering down all day long, over and over again and making noise in between but you never noticed it until everything else was turned off and it was quiet.

I can write about these things and you can relate to these things because we’ve all had these experiences, or similar experiences anyway. But actually, not all of us have.

For many people with Sensory Processing Disorder, they don’t have those revelations of “wow, I just noticed that!” because they’re very keenly aware of all that noise all the time. They’re very aware that the fridge is powering up and down all day even when you’re not. They’re very aware of the traffic and planes and music and people talking and machines humming and everything else in the city. They’re bombarded by all of this all of the time because for them, it’s not background noise. It’s noise. There is no filter in their mind that says “this isn’t important so push it into the background.”

Getting it? Well, consider this: that’s just one of the many senses we have.

Bright lights, flickering lights, colourful lights, scratchy fabrics, hard chair, soft chairs, people touching you, sweet tastes, sour tastes, stringy foods, mushy foods, hard foods, strong smells, lingering smells… I could go on and on and on. All of these things and more are not filtered for many people like it is for you.

You put on a sweater that you might describe as “not the softest but it’ll do” while someone with Sensory Processing Disorder would describe it as a thousand spiders with razor feet crawling all over them.

And that’s the take away here. These things that I describe to you are not minor annoyances. These aren’t “ya, that would suck” experiences that most people think they are. These truly are torture devices.  Imagine try to go about your day with headphones on and in those headphones you hear 30 people talking, 5 planes, 12 cars, 6 machines running and loud music on top of all of it but you can’t take the headphones off or turn it down. Imagine that for 2 days. 3 days. Every day. That would drive you mad. Now imagine that also happens with sights, tastes, smells and the things you touch as well.

Does it still make no sense to you? Don’t worry, you’re not alone. Most people think in terms of what relates to them.

When we’re first born, we lack the theory of mind to think of situations from another person’s perspective. Most people develop that as a toddler but there’s always still a small part that lingers where… if it makes no sense to you, then there’s no reason to accept it.

I see it a lot on my Minecraft server actually even with hard set rules. If they don’t understand why a rule is a rule, then they just assume that it doesn’t apply to them since it makes no sense. Meanwhile many of the rules are there for exactly this reason… such as colourful text in chat. If all chat was colourful, it would be too hard on many young player’s senses. But some players don’t think that’s true because it’s not for them and therefore, should be ok for them to do.

It’s like… if I can handle all this noise, and this guy can and this guy can… then you can too no matter what you say.

If you are still struggling with this then this is what I suggest you do: Get a recording of noise. Just noise. Background city noise or what ever. Have that loop into some headphones that you wear for one day. Next, put some steel wool in your shirt. Doesn’t have to be a lot. Just a clump of the stuff in there. Every hour, take a bite of a lemon and smell some smelling salts. Finally, get one of those little devices that the doctor has to look into your pupils with and shine that in your eyes every 15 minutes throughout the day.

Sounds crazy? Perhaps. But try it, for one day. Wake up and begin and don’t stop until bed.

Then you might understand what it’s like for some people.

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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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The one thing I wish I could tell every depressed autistic child

enduranceSince starting Autcraft, I’ve talked to a lot of depressed autistics, mostly children. Many of them were suicidal. This is not something I recommend for most people to ever try. It is a very heavy burden that can weigh heavy on your heart after a while.

I find that this happens a lot for me because I am the ideal candidate for this to happen to. I’m an autistic adult who’s still a kid at heart and once was a depressed autistic kid just like them. To say that I can relate is a massive understatement.

For those of you that watch The Flash, the new television series about the super fast superhero, you’ll totally get what I’m talking about here but if you don’t, don’t worry, I’ll try to explain. In the television show, there is The Flash who can run crazy fast but there’s also another guy, the villain, who they call The Reverse Flash. He runs even faster. The problem is, the good guys don’t know who this Reverse Flash really is until he slips up. In an effort to help The Flash run faster than he’s ever run before, he begins encouraging him by explaining to him how to reach those speeds, how to feel as the speeds take over him, how to handle the experiences he’s now going through. It was then that The Flash, our hero, realized who The Reverse Flash was because only he would know what it was like. Only someone that has shared those experiences could truly understand him.

In my case, these children that come to me to talk to me about their lives because they know who their Reverse Flash is… I can tell them what they’re experiencing, what they’re feeling and hopefully, how to get through it faster. I understand.

When they start to tell me how alone they feel, I can explain exactly what it is they’re feeling in words that they’ve never been able to before. When they say that no one understands them, I not only describe exactly how that feels for me as well but in doing so, I show them that there really is someone that understands them.

So knowing that, I’ve come to realize that there is only one common piece of advice that I give to most people that seems to help… and it’s the one thing that I wish that I could tell all young autistic children everywhere: “there’s an older you that needs you to endure this.”

When I think back to the younger me, I wish so hard that there was some way that I could just go back in time, to myself, just to tell myself, “I know it’s hard. And I know you never believe it when anyone else says it but maybe you’ll believe it from me, from yourself… endure this because it’s worth it.”

We’ve all heard “it gets better” but we all know that a child never believes that. Not when life is that bad. There is no one that can ever convince you of it. That goes double if you’re autistic. I can’t tell you why but if you are autistic, you know it.

But there is a future you, a happy you, a you that makes a difference in the world and is doing alright. And that future you, if they’re anything like me, would love nothing more than to have a chance to talk to you right now just to let you know that it’ll turn out alright, but first you have to endure this. And yes, it will suck. But as there’s a future you wanting to telling you this, you know that you can do it.

There are no time machines but even if there were, there are far too many autistic children that never give themselves the chance to meet their future selves. Perhaps if they could have, they would have seen for themselves that if only they can endure this… it will be worth it.

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Children with autism that do well are rewarded with cut backs

An autism parent recently contacted me to ask if I knew of any high schools with special autism programs because she feels that she may be pulling her children out of the school that they’re currently in. Why? Because her son, whom is getting grades of around 80%, is at risk of losing his EA (education assistant) as well as the aides that help him to get his work done, such as a keyboard since he can’t write. Why are they taking these things away from him? Because he’s getting good grades. Why is he getting good grades? Because he has these things.

A similar scenario happened for me as my own son approached the age to go to school for the first time. In the beginning we were promised a special program but as we made progress with him, that was changed to him having an EA with him in class. The following year, we were informed that he’d get no assistance at all and would be put into a regular class.

We moved.

So why are good kids making good progress being punished? Funding. The government only gives a certain amount of money to these programs and then it’s up to these programs to figure out where the money has to go. That means prioritizing.

If your child is making good progress, then the funding is “reallocated” towards another child that isn’t doing as well and therefore needs that money more. It makes sense on paper. In the real world though, with real human beings, that sounds like those at the top are being punished. It’s clearly not as simple as “he doesn’t need it as much.”

This sounds pretty terrible already but what happens when the funding gets cut and is now lower than it was before?

This is basically happening everywhere but you likely won’t hear much about it. Locally, where I am in Ontario, it’s happening right now. And even though I can link this news story to prove it, I can also pretty much guarantee that no one in Ontario (aside from the schools) knows it’s happening.

“To lose educational assistants? Those people help the most vulnerable students, the kids with learning disabilities, the kids with autism, the kids that are struggling. It’s shameful that this is what the government is doing and that they sold the people the opposite bill of goods in the election campaign.”

People are losing their services as they age out (become adults), as they make progress and as the government decides it. Services that they really need! It feels a lot like  “robbing Peter to pay Paul.”

Unfortunately there’s very little we can do. Those people at those programs can’t do anything to help even if they wanted to, which I’m sure they do. But they can’t justify continuing to give your child that money when another child might need it more.

The only real answer is adequate funding. Which seems pretty silly with all of the attention that autism has had in recent years. Most of the states in the US now include autism therapies within their insurance plans, most everyone has heard of it by now and several schools even have specially dedicated autism programs. And yet governments continue to make cuts.

The take away? If you want your child with autism to continue having services, don’t let them do well. Because the reward for doing well is punishment.

And just in case you think this isn’t a very serious and very real problem, let me leave you with these from various places and various years:

http://www.citynews.ca/2015/03/18/parents-of-autistic-kids-worried-about-ontarios-cuts-to-school-funding/
http://www.timescolonist.com/news/local/b-c-plans-to-slash-funding-for-adults-with-disabilities-1.77768
http://abc7chicago.com/society/state-funding-for-autism-program-cut-on-world-autism-day-advocate-says/612111/
http://www.clarionledger.com/story/news/2014/05/07/rankin-county-schools-abolish-autism-program-parents-angry/8806557/
http://www.sj-r.com/article/20150406/NEWS/150409621
https://www.change.org/p/don-t-cut-the-autism-program-for-middle-and-high-school-students
http://www.yukon-news.com/news/whitehorse-parent-pleas-for-more-support-for-autistic-daughter/
http://www.abc.net.au/lateline/content/2012/s3574820.htm
http://www.ctpost.com/local/article/Parents-decry-proposed-cuts-to-autism-other-6217528.php
http://omazingkidsllc.com/tag/cuts-to-autism-programs-in-oklahoma/
http://www.washingtonpost.com/local/education/parents-protest-cuts-to-autism-program-in-arlington/2014/05/14/fae086a4-db6f-11e3-8009-71de85b9c527_story.html
http://www.disabled-world.com/health/neurology/autism/schools-autism.php
http://www.kelowna.com/2009/10/28/kelowna-moms-protest-government-cuts/

 

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