Archive | June, 2015

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.

Comments { 4 }

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.

Comments { 5 }