A few things you might not know about autistics for Autism Awareness Day

Autism ExceptionalI have had the fortunate opportunity to be able to talk to a lot of children with autism, thousands. Many of those talks are about some very deep and heavy topics. But many of these topics are either not being discussed or not openly enough to where I have been able to come across them. I can only imagine that this means that people don’t know these things. So, for Autism Awareness Acceptance Day, allow me to share with you what I’ve learned.

More Likely to be Bullied

I’m starting out with something that most people likely do know. In fact, there have been studies done regarding this. While the study does include some of the factors for why people with autism are more likely to be bullied, most people still ask me why this could be, especially on a Minecraft server where you can’t really know that the other person has autism.

Well, you don’t have to know how a person is different to know that they are in fact different, and to a bully, being different is all it takes. Many children with autism (or any other diagnosis) will behave differently in a social setting than their ‘typical’ counterparts. Whether it be obsessing over something, not understanding innuendo or sarcasm, using words or phrases incorrectly or being easily prone to emotional outbursts such as excitement or anger. All it takes is one instance of being “weird” in the mind of a bully to make you a target.

To be a victim of bullying is to be a victim of abuse. Whether it’s physical (at school or in a playground) or emotional (online), the effects are damaging and can often do far more damage (trauma) than good (makes you stronger).

Likely to become a bully

Many of the children that come to my Minecraft server end up bullying others. They tell them what to do, they get angry when someone ignores them, they say the meanest thing possible when mad and even try to destroy other people’s builds when angry. Why?

One of the reasons this happens is, as I said, a child with autism may be prone to emotional outbursts. This means that something that may seem minor to you or me may mean the world to that child. Or, maybe it still doesn’t mean much to them but the ‘act’ was taken so personally that they felt very hurt by it. Often times the child will feel terrible after but in that moment, when that emotion hits, they lose control. This turns them into the bully that they hate and fear so much.

Another reason is that the bullying behaviour is all they’ve ever known and thus, how they think they should be. They spend almost their entire Internet experience being bullied everywhere they go and therefore, when they finally find a place that accepts them and allows them to play without judgment, they slowly revert to the behaviour they know… which is bullying. Even though they hated it, even though it’s the last thing they’d ever want to do… it’s all they know.

Finally, another reason may be that they’ve become so broken by the relentless judgments and bullying elsewhere that they have a hard time of letting go of their defensive posture. They’ve been attacked for so long that they see any minor disagreement or even accident as a personal attack on them. In most cases, they’ve had to fend for themselves and so even when they find a place where they can turn for help, whether it be my server or a school teacher or their own parents, they still feel that they’re alone. Much like a soldier returning from war, having to fight for so long, it’s hard to let that feeling go.

Explanations are necessary

Most children test their boundaries but at the same time, do as they’re told because you tell them to. There’s this relationship established automatically where you’re the adult, thus you have authority and the child must do as you say. If they do ask why, often a “because I said so” response will suffice.

With children that have autism, not always but is often the case, that authoritative relationship is not automatic and quite possibly may never exist. Instead, the child will understand that you make the rules but feel no obligation to follow those rules unless it can be explained to them why it’s a rule in the first place. There needs to be some reason for the rule that they will need to understand before they are to abide by it.

Instead of getting angry or trying to use force, take the time to explain why things are how they are.

More likely to seek friends

Most people in the world think that autistics are anti-social and would rather be alone all the time. While it’s true that many with autism find it difficult and even painful to socialize, that doesn’t mean they don’t desire it. From what I’ve observed, most children are weary of adding just anyone to Skype or friends lists, or at the very least, only choose those that they’ve already talked to.

Many children with autism, on the other hand, are so eager to make and have friends that they will seek out and add anyone that will be willing without taking safety or security into account. This often gets them into trouble.

Obviously this is not always the case as some are quite shy, scared or so extremely cautious that they’d never add anyone to anything but in general, as I’ve observed, the children with autism will go to much greater lengths to seek out new friends than other typical children. Their need to socialize and have a friend far outweighs the pain and struggle that the socializing causes them.

The greatest punishment that you can never give

Guilt is by far the worst thing that any child will ever experience as a consequence of their actions but when it comes to a child with autism, that guilt can last them and be in their thoughts for the rest of their life. I’m not talking about how people say you can regret something for the rest of your life, what I’m talking about goes much deeper. Those with autism can pull up the heaviest, darkest feeling of guilt from something 40+ years ago in an instant for no apparent reason and feel it as though it happened an hour ago. That even plays out in vivid detail over and over again with no indication of stopping.

If you see this in your child or someone you know, believe me when I say that no punishment you can give them to “teach them a lesson” will come anywhere close in comparison.

It’s in these moments when you need to be the voice of reason, the one to help them to not only absorb the lesson but to move beyond the guilt. Because if you don’t, it will linger with them forever.

If you can remove that fear, progress becomes exponential

There is really no substitute for a caring and well trained therapist, professional and of course, parent but even when in the company of these people, a child will feel nervous, anxious and even scared. Afraid to do or say something wrong or nervous about not being able to live up to expectations. A child may just shut down or at the very least, not retain what is being taught to them.

I found a way to take all of that away and to allow children to talk and play and do things together all without any fear or anxiety. And from that, the truly remarkable happened… progress!

No, I’m not saying professionals don’t help children make progress but I’m talking about massive progress, exponential progress on levels so absurd that the children are learning well beyond their years about things that no one is really even trying to teach them.

When you remove the fear of embarrassment, or teasing or bullying, a child will open up in ways that you could never imagine. They are free to indulge in what interests them without worrying that people will think it’s silly. They are free to meet other people that share those interests! They are more willing to take in and process what others say as their minds become more relaxed and accepting of new information.

These children become hungry for more, pushing themselves to better equip themselves so that they can become even more involved in the conversations around them, to know as much or more than their peers and to share what they’ve learned without fear of someone saying that it’s dumb, or they already know it or it’s not worth knowing. They take the next steps on their own, no need for a push.

If you want to see a child with autism learn faster than you can teach, find a way to remove the fear and self doubt. Easier said than done, but if we can do that, there’s no limit to how far they can go.

April 2nd is about far more than just diagnosis rate numbers

If you take anything away from this Autism Awareness Day or month, please understand this: many of the children in this world that have autism are extremely bright, they’re very capable human beings that are very caring and passionate people that can exceed all expectations if only they could live without fear. But instead, many of them are dying, taking their own lives at very early ages under the heavy weight and burden of constant abuse that we attempt to make sound not so bad by labelling it as bullying.

Instead of being frightened by the number of people being diagnosed with autism this year, you should really be concerned about the number of children that will kill themselves due to fear, bullying and abuse.

Those are the numbers that scare me most.

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Second annual plea to the Minecraft community to take a stand against bullying on April 2nd

Last year I wrote a plea to the Minecraft community to help those of us in the autism community on April 2nd to take a stand against bullying. I am doing it again this year. Why? Because we still need your help.

The response last year was incredible as many live stream gamers and YouTube video makers spoke up and shared their personal stories and explained to people the effects that bullying has had in their lives. Since then, the media has picked up on what has been going on as well and increased awareness to more than just our little community.

But we’re not done. Every single day on Autcraft (Minecraft community for those with autism and their families) we talk to children that are being bullied at school, bullied on other Minecraft servers and in some cases, they’re even bullied by their own parents that fail to accept that they have autism and the struggles that come with it.

words hurtSome children miss days or even weeks of playing on the server due to the emotional stress and even sometimes due to the physical pain they suffer as a direct result from bullies. Some children come to my server angry having just been on another server where they were tormented and ridiculed… called “retard” and told that they should never have been born or worse, that they should kill themself.

Suicide is the third leading cause of death among young people, resulting in about 4,400 deaths per year, according to the CDC. For every suicide among young people, there are at least 100 suicide attempts. Over 14 percent of high school students have considered suicide, and almost 7 percent have attempted it. – http://www.bullyingstatistics.org/content/bullying-and-suicide.html

It breaks my heart every single time a child asks me for advice and though we talk for hours and they feel better by the end, the truth is, I have no real advice to give. I can’t make the bullying stop. I can’t make that pain go away for them. I know that no matter how I can make them feel in that moment that the next day they will just find themselves being bullied once again.

Almost all children encounter some form of bullying at some point, which in itself is a terrible thing to consider but what’s worse is that those with autism are far more likely to be bullied than anyone else. Not only are they more likely but the amount and type of bullying is often far worse as they are made to feel like they are a burden on society and even their own parents. They’re made to feel like they’re worse than worthless, that they’re a weight on the human condition and are bringing down the world just by existing. They are encouraged to commit suicide. They’re only kids.

Just yesterday, I heard that a 10-year-old in our community took his own life. I sat down and had a long talk with my girls. [My child], who plays on your site and has Asperger syndrome, was bullied so badly by a boy that the boy was given a cease and desist order not to go near her. Something has to change.

– From the mother of a child on Autcraft

Why are those with autism more likely to be targeted or treated this way? Well, because people with autism are inherently different from most people. They struggle to socialize and communicate in the way most people would and are often more prone to extreme emotional outbursts. The truth is, you know as well as I do that all it takes is a tiny spark of being different to make you a target for bullying.

Despite those differences, despite what people and more specifically, those bullies, may think, I see autistics in a very different way. Ever since starting my server, I’ve watched a community grow around a foundation of support, friendship, sharing and compassion. These kids are there for each other, they’re excited to see each other, they support each other in what ever their ambitions are and they work hard and play together better than any community I’ve ever seen before.

If I could open the doors to the world and let people see what I see, I think many people would be very surprised. It’s not at all what most would expect from kids that they think are anti-social, non-communicative introverts. That’s not them at all.

But once they leave my server and visit another server or go back to school or head to the playground… they’re not protected by that strong supportive community anymore and I’m the one that they come back too. Myself and my team on Autcraft, we’re the ones that these kids come too and unload all of their hurt and pain and suffering on. We’re the ones that hear all of the stories that the rest of the world doesn’t… but probably really should.

There is no reason that a child should be limited to just one Minecraft server to play on because of bullies. Children with autism, all children for that matter, should be free to play on the servers that they wish to play on without fear of being told to kill themselves, or to be tormented by griefers, thieves and constant PVP deaths making the game unplayable for them.

The Minecraft community is better than that. I know it is. But only when we speak up and don’t allow those few bad people to do these things. We must speak up. We must make them stop.

These kids can’t suffer in silence anymore. We can’t be afraid to share our stories and to take a stand against this.

Bullying isn’t bullying, it’s abuse, it’s torture, it’s assault. We need to stop pretending it’s not.

Children are dying. Good children, beautiful children.

So please, I’m begging you on behalf of my server and on behalf of the autism community… please take a stand against bullying on April 2nd, Autism Awareness Day.

If you stream live video, if you make YouTube videos, if you just happen to be on a Minecraft server chatting with others, if you blog or vlog… what ever it is you do, on April 2nd, please help me and help us to prevent this abuse and to save real lives.

I can’t do it. But maybe we can do it together if we work together.

From one Minecraft player to another, please help me.

– AutismFather

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We need to stop referring to abuse as bullying and schools need to stop doing nothing about it

Picture this, if you will, as disturbing as it is: A woman sits in a hospital room with a fractured skull, broken jaw and leaking spinal fluid. Everyone knows who her attacker is but no one is doing anything. No arrests. No charges. The attacker is free to do as he pleases.

Make sense?

Well, the truth is that it wasn’t a woman. It was a 12 year old boy with Aspergers and his attacker was an older boy, in grade 8. Because this happened between kids in school and not adults, instead of being abuse, this is just bullying…. “just bullying”.

Wait, he has a fractured skull. He was almost killed. How is this “just bullying” when, if this was a grown man doing this to a grown woman, it would be abuse? or manslaughter? or attempted murder?

You can read about this in the news, although, it’s not easy to watch: http://www.cbs12.com/news/top-stories/stories/boy-aspergers-syndrome-hospitalized-after-bully-attacks-him-at-school-parents-23752.shtml?wap=0

You’d like to think that this is an isolated incident since we don’t read about this in the news every day but it’s not. This happens ALL. THE. TIME.

Let me break some of this down for you.

  • » 64 per cent of kids had been bullied at school.
  • » 12 per cent were bullied regularly (once or more a week).
  • » 13 per cent bullied other students regularly (once or more a week).
  • » 72 per cent observed bullying at school at least once in a while.
  • » 40 per cent tried to intervene.
  • » 64 per cent considered bullying a normal part of school life.
  • » 20-50 per cent said bullying can be a good thing (makes people tougher, is a good way to solve problems, etc.).
  • » 25-33 per cent said bullying is sometimes OK and/or that it is OK to pick on losers.
  • » 61-80 per cent said bullies are often popular and enjoy high status among their peers.

(Source: Centre For Youth Social Development, UBC Faculty of Education)

The core problem here is that bullying is very rarely, if ever, witnessed by a teacher. This means that even as a child is lying in a hospital bed, the only real ‘evidence’ anyone has to go on is a bully’s story versus a victim’s story. The school board “business heads” send a mandate down to the schools telling them that they can do nothing. They can’t make any statements, they can’t hand out any punishments. The most they can do is “investigate” which is to say, ask around and see if anyone else saw anything but none of that circumstantial hear-say really holds any weight either way anyway.

And so this becomes school yard bullying. A “normal part of school life” where both victims and the parents of the victims are powerless to stop or prevent it.

This is very similar to another phenomenon happening within hospitals around the world where doctors are having their hands tied while their administrators are forced to make decisions based on funding and stature. For example, several times in the past we’ve seen doctors refuse to do life saving procedures on good people with special needs based solely on the fact that they do have special needs and therefore, do not merit having their life saved versus someone else that might need the same procedure and does not have “anything wrong with them.”

Don’t believe that happens? I’ve written about it before.

A teacher that does nothing to stop bullying because of the rules from their administrators is in the exact same position as a doctor that does nothing to help save someone’s life because of their administrators. I don’t blame them… sort of.

Still though, I’m reminded of something that John Stuart Mill once said:

Bad men need nothing more to compass their ends, than that good men should look on and do nothing.

I sit and watch as parent after parent on social media cries out for justice, that the bully be charged, expelled or much much worse. (“if it was my child that he did that too…“)
But nothing is done. Nothing will be done. Schools will continue to sit on their hands, unable to make statements, unable to stop it.

To the teachers, counsellors, principals and everyone else involved at the school level, please help us.

I get it. The administrators sitting at the top, they won’t let you do anything. But I’m calling on you to do something anyway.
This has to stop. Now.
And the schools are holding all the cards to do that.

Until the schools all step up to do something more than assemblies or “anti-bullying awareness campaigns”, this will continue to get worse and worse.

Maybe the school board tells you no. Maybe you will get fired for it.
But do something anyway. Because the next child to fall victim might be yours.

If the person that did the bullying is not to be blamed, then surely those that stood around and did nothing about it are.

When it’s a man and a woman and even when it’s a man and another man, this is abuse. But when it’s two children, it’s bullying.
We must stop looking at this way. Abuse is abuse. A human life is a human life. Let’s stop trying to make it sound like it’s not important just because it’s between children.

If a teacher can’t get away with breaking the skull of another teacher without consequences then a student should not be able to do it to another student.

Stop saying “just bullying” and let’s call it what it is. Abuse.
And let’s start treating it as such.

 

For more heart breaking statistics and information, please visit http://www.stopabully.ca/bullying-statistics.html

Einstein Quote

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The question I asked my son every day of his life until I needed him to ask it of me

What do you do when you fall downRecently life has been, we shall say, unkind. People who would steal from me, people that would try to hurt me, stresses greater than any I’ve felt before, illness and immense pressure. I find myself in the greatest financial burden that I’ve ever been in all the while outside forces conspire to make it even worse for me.

To say it’s been rough would be the greatest of understatements.

Late one night, unable to sleep, I found myself reading back through some of my old writings when I happened upon a question. A question that I used to ask my son every single day of his life. I remembered how he would sometimes answer in a frustrated tone, as if this was starting to become an annoyance for him. But I continued to ask him. It was important. I needed this question to be a part of his very core. Always.

I had forgotten about it. How did I forget? When did I stop asking? How did this happen? How long has it been since I asked him? I don’t know.

“What do you do when you fall down?” He’d answer “You get back up.”

I found this in my writings because one time, just once, his answer was different. He said “You get back up. You never give up.” I wrote about that. It was the first time that he included that second part, to show me that he really got it. He knew that I didn’t mean to literally fall down. He knew the wider scope. He knew.

But I stopped. I forgot. I didn’t even notice.

At the time I thought that I was repeating this very frustrating, annoyance of a reminder through out his life because I thought he needed that constant reminder. I thought that one day he might forget and that I’d be the one to be there to remind him. I thought that if I said it often enough, he wouldn’t even need a reminder.

But I stopped. I forgot.

I realize now that I wasn’t just telling him to remind him. I was the one that needed reminding. And I stopped. I forgot.

What do you do when you fall down?

You get back up.

Thanks for reminding me son.

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5 Things I wish I knew before Autism

Tamara Wood is a proud mother of two amazing boys. After searching for a solution for her son Alex, who is affected by Autism, Tamara found the AngelSense solution for her family. It gave her a great deal of peace of mind, and her enthusiasm for the company only increased – she joined the AngelSense team as a customer care specialist.

tamara's familyI am the mother to two wonderful little boys, one who has autism and one who is “normal” (whatever that is!). There are many things we didn’t know before we became parents, and even less when you hear a word like “autism.” There are somethings I wish I had known before my son was born, and I wish I could share them with every parent out there.

 

Insurance

Before autism, the most I cared to know – or needed to know – about insurance was copay, deductible, out-of-pocket, yada, yada, yada… I wish I had known all of the loopholes and red tape that can make your head spin concerning HPCPS and ICD-9 codes and all of those neat little “tricks” that you should really do to make your life easier. Like keeping track of who I spoke to and that gosh darnit they did say that! – this is more than just a good idea, it is crucial people! Or how a medical/insurance journal with a history of therapies, doctors, important health info, and bills is beyond just being organized; it is a savior of brain cells at those times when my brain hurts on marathon phone call days.

Acronyms

I wish I had known that I was going to be learning another language for school/therapy. ARD, AU, IEP, BIP, AT, ESY, LRE, OT, PT, ST, etc., just to name a few. Now these acronyms have been a part of our lives for almost 7 years and just slip off the tongue, but boy, can those ARD meetings be confusing when they are literally speaking a different language.

The AUsomeness of the autism community

I wish I had known going in that I was going to be a part of a very special group of families that are so free with advice, support, resources, and all around laughs to help you through. I can’t express how much of a release it is to talk to others that understand and can find the humor in our daily lives. Swapping public meltdown stories, how talented my son is at finger painting his whole room at 3am (that smell is not funny at 3am), and just being able to relax with others who “get it” is very important.

Romance

I wish I had known that the definition of romance was going to change. Finding an experienced sitter, having money, having time, and honestly just having the energy are just some of the factors. Romance in our house is my husband doing the dishes for me, helping each other clean up the 3am finger painting, being an eternal tag team for when the other has just had too much, and dates that are only retreating to another room to sit and watch TV because we just don’t have the energy to do much else. And finding that this can be enough.

The Box

I wish that I had known that thinking outside of the box was going to actually be the only way of thinking from then on. Our life is the equivalent of having a beautiful boy with the curiosity and development of a toddler and the physical ability of a 10 year old – for the past 8 years. This makes thinking about safety (and sanity) a very big part of our lives. Going out to eat, planning a date, going to the store, holidays, and even just rearranging the furniture require quite a bit of resourcefulness and thinking outside the box.

It has been a rough road at times, but I can’t imagine our lives any differently and I wouldn’t trade our kids for anything – we love them just the way they are. The autism community has brought me something else – recently, I have been blessed to be able to work from home in order to take care of him. And I am doubly blessed to be able to work for AngelSense, a company that helps us keep him safe by knowing where he is at all times and being able to listen to him throughout his day.

Founded by parents of special needs children, and employing other special needs’ parents, AngelSense provides so much peace of mind in so many ways. With the Guardian GPS device I can monitor my son through out his day, when he is out of our sight. I can check on him from my smartphone or the computer, and make sure he’s where I want him to be! Working for a company that understands me and my family has been just another example of the wonderful way we all support each other. I know so much now and hope that sharing my experience helps someone who might feel alone today.

Visit AngelSense at: https://www.angelsense.com.

 

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