Tag Archives | fear

The effect that blaming autism on vaccines has on actual autistic children

Trump calls autism an epidemic as the result of vaccines

Trump calls autism an epidemic as the result of vaccines

So now we’re back to the whole anti-vaccine thing thanks to Donald Trump’s comments during the republican debates. Despite overwhelming scientific studies that have proven that there is absolutely no link between vaccines and autism, we continue to have people like Mr. Trump who prey on the fears of parents. I thought I’d take this time to explain to you what I see from the children that come to me asking if it’s true.

Most of the time, not always but a good 90% of the time, when a child asks me about vaccines and autism, they do so from a very personal place. Now granted, those other 10% of kids have a scientific curiosity and you can tell that they are genuinely just curious but for the rest, for all those other kids that I talk to, they’re worried and they’re scared. They feel like a mistake, an abomination and a victim.

I’ve talked to a lot of anti-vaccination parents and I know it’s not their intention and I know they love their children as much as any other parent but to be perfectly honest, that has absolutely nothing to do with anything. Intentions or not, this is about how a child feels when they are told that they are a damaged product of a broken system that their parent didn’t want. Harsh? Maybe but this is the message that the child is receiving.

You don’t understand the damage you are doing to your own child with this nonsense. You really don’t. Your child will never tell you this because they are scared to death that you hate them and what they are… a broken version of the kid that you actually wanted. You are damaging your own child even worse than what you think those vaccines are doing. Your children are reaching out to total strangers on the Internet in search for answers because they are convinced that they are not the child you wanted. They are convinced that they are the source of your anger and your rage and your disappointment.

And you will disagree me and you will tell me that it’s not your child that I’m talking about but I’m telling you right now, and please listen to me… you clearly don’t see the impact. I am talking to these children every day and it’s breaking my heart. No one can convince them that they’re not a mistake and no one can make them believe that their parents love them when they grow up feeling like they are the foundation of your hate. And these children won’t let their parents know this. They don’t want to hurt their parents any more than what they think they’ve already done.

Please. Please! My heart is breaking for these poor children. They can’t take this. No child should be feeling this way! You can’t do this to them. You just can’t. I beg of you. I’m not asking you to stop believing what you believe. I don’t know, maybe I am. All I’m asking is… please stop doing this to your own children. To all of these children. To every child everywhere that is scared to death that they’re a broken, disappointing autistic byproduct of being poisoned.

Please don’t do this to them anymore.

  • I am Stuart Duncan, owner of Autcraft, a world wide Minecraft server with a user base of 6000 children that have autism. I speak to many of these children almost daily about some of the most personal aspects of their lives. I will not be sharing names or direct quotes as I do not want any of those children to feel like I am singling them out or giving clues as to their identity.
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This is why I see children with autism very differently than everyone else

When I started Autcraft, I did so to help out the parents on social media that cried out for someplace that their autistic children could play together without the fear of bullying or torment. On June 23rd, I told a small number of those parent and within two days, I received over 750 emails.

That was when I realized just how big this bullying problem really is.

Since then, Autcraft has kept thousands of children safe from bullies. But that’s not all. That’s just the start.

Children came to the server shy, scared and unsure of what to expect. Many didn’t speak in public chat for quite some time. You could say that it went as most people would expect of children that struggle with communication and social structures. Anxiety, fear and shyness were the foundation that most new players started their experience on the server with.

What happened from there is truly amazing.

The players opened up to each other. They supported each other, they shared with each other, praised each other, encouraged each other and lifted each other higher. They did these things because they knew that there would be no one there to push them back down again.

no fearFor the first time in their lives, they were free from the burden of fear. No longer afraid to be bullied or judged or embarrassed or even to fail, these kids felt safe enough to share who they are, what they like, what they think and they even felt safe enough to make mistakes. They weren’t afraid to spell things wrong or to say the wrong thing. They weren’t afraid to admit that they were interested in things that people elsewhere might tease them for.

As they spoke up more and more, their reading and writing improved, manners improved, their control over their emotions improved, they worked together to solve problems and learned from each other… the progress that they made baffled their therapists.

Many people credit me for this as I am the creator of the server but the truth is that there are many factors to consider.

Anonymity has always played a big part in how people behave online. But for these kids with autism, it isn’t the biggest contributor to their success. In fact, for most that have played on servers prior to Autcraft, their fears only grew. Constant bullying, frustrations and rage often meant that they couldn’t even participate much less find any enjoyment. This is why their parents reached out in the first place. It’s why Autcraft was created. Their anonymity did not help them there.

However on Autcraft, that same anonymity does help. In the game, they are an avatar. That’s it. They don’t have to think about the their body language, facial expressions, any fidgeting they might do or people making noises around them. In the game, they’re a collection of pixels as are the people they’re talking to. There is nothing to focus on nor anything to distract them. The social aspect is narrowed down and streamlined.

The second biggest factor is that I created the server based on a foundation of communication. Anyone caught doing anything wrong will be spoken too. We explain what they did wrong, why it’s wrong and better alternatives. Children are encouraged to confess so that things can be fixed and moved on from. They learn that we don’t get mad and that they don’t have to be afraid of us. They learn that we understand them and if not, that we want to. They become comfortable talking to us because of that understanding and they learn that being open and honest from the start is the best way to avoid having things get worse later. They are no longer afraid of making us angry, they are no longer afraid that they’ll be punished and they are no longer afraid to admit that they’ve been wrong.

So what is the biggest factor towards the success of all of these great kids? Themselves and the community that they’ve created. This community gets stronger and stronger all the time and it’s all in how they treat and support each other. Once the fear is gone and they start working together, nothing can stop them.

Once they are free to share their interests, they find other children that share those interests. No longer being afraid means that they don’t feel like they have to fake their interests to either hide or to seem like a desirable friend to others. No matter how much they think others might find their interests odd, there is almost always someone that also has that very same interest. Once they find each other, they teach each other new things and share new things and really start to grow and progress together.

They aren’t being taught how to read and write, they are actively trying to get better at it on their own and in their own way. They have a desire to do it because it excites them, because it makes things better for them. Before the server, it seemed like people were trying to force them to learn things they just didn’t understand.

I’ve seen autistic children talk for the first time ever after playing on my server. I’ve seen countless children make friends for the first time ever after being on my server. I’ve written letters of reference for children that have gone off to get their first jobs after being on my server. I’ve seen children become role models and leaders!

All of this and so much more and it’s because they’re not afraid. That’s it. That’s all it is. They aren’t afraid of what a bully might say or do. They aren’t afraid of being teased for who they are or what they like. They aren’t afraid of being embarrassed for saying or doing something wrong. They aren’t afraid to make a mistake.

When most people think of children with autism or even when they talk to children with autism, the child they think they see before them isn’t the true child. The person they’re talking to is a collection of fears and anxieties. The child may even simply be doing what they think you want them to do rather than what they’d do naturally. They present to you a facade that hides the real child deep inside. The fear of what you think of them, of how you will judge them and of all the ways in which they might do something wrong… these fears are preventing you from talking to the true child hidden within.

On Autcraft, within their community of peers, friends, supporters, brothers, sisters, in that place where these kids feel safest of all is where I get to see them for who they really are. They are strong, they are proud, they are funny and they are brilliant.

If you want to see real progress, real growth, real education and real happiness, you must remove the fear. If you want to see a child for whom they truly are, you must remove their fear. If you want to be you… you must not be afraid.

When you can strip away that fear, whether you overcome it or push it aside, when fear is no longer holding you back, you stand taller and you feel stronger. When you can do that, you find people that will support you, encourage you, be your friend and be a part of your team.

No matter your race, gender, sexuality, religion, political views or anything else, whether you have autism or not, no matter who you are or where you are in life… when you remove the fear from your life, you’ll find people that will join you and together, anything is possible.

Without fear, anything is possible.

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If I could could suggest just one New Years resolution, it would be this

resolutionsI know this is a bit late but there are still some people out there that are unsure of what they should “resolve” to do for the new year.

Well, Autcraft, my Minecraft server for children with autism and their families has been receiving some media coverage in recent weeks and there was one question that I got from everyone that really stands out as very important and thus, would make for the perfect New Years resolution: “What is it about Autcraft that is helping these kids to make friends, to talk to other people, to learn to read/write faster and to make such great progress in such little time?

The answer? Be less afraid.

On the server, we remove the risk of bullying but it’s more than that. The children there all have a lot of similarities and know what it feels like to be judged or bullied or hurt, so they don’t do that to each other. They welcome each other’s obsessions and ideas and if they do disagree, they do it in a way so as to not upset each other. This allows them all to feel unafraid to express themselves and even make mistakes.

I’d like to break this down into a New Years Resolution sort of way to look at it.

Be less afraid to be embarrassed

One of the biggest fears many of us have is the fear of embarrassment. We don’t want anyone to laugh at us or to think we’re stupid and so we either take the safest path or just do nothing at all in order to avoid that risk. However, when you watch some of the greatest comedians ever, their greatest asset is… embarrassment! They get as silly as they need to be in order to entertain us and to laugh… not to laugh at them, but to laugh because they want us to laugh.

So how do you be less afraid to be embarrassed? You own it. If you slip and fall or make a mistake, you laugh first and then you tell others about the crazy thing you did. When you own it, it’s your joke and it’s your tool to do with as you wish. How can anyone ever make fun of you when you own the tool they’re trying to use? That’s what the comedians did. They took something that they should have been afraid of and they took ownership of it. Once you do that, you’ll be less afraid to do it in the future.

Be less afraid to be yourself

This is the hard one because everyone likely wants you to do what they consider normal or what society expects of you. Now granted, if killing everyone is how you think you are, then this doesn’t apply to you. But thinking differently from the rest of the world is how great inventors change the world or how scientists make sense of the universe. If you stick to the previous point (less afraid to be embarrassed) than this should actually be an easy one for you. Being yourself, as wacky or silly or quiet or what ever you want to be might not be huge world changers but it will change your world. It will change for the absolute better.

When you be yourself and others are able to be themselves, that’s when you truly do find people that you have a lot in common with. That’s when you start making real friends because now you’re being open and honest with someone. Many friendships that I see are based on lies or huge compromises and even sometimes, I wouldn’t really call them friends. But if you are yourself and your friend is too and you like each other, there’s no greater friendship than that because you are both being honest with each other and yourselves.

Be less afraid to hurt yourself

I admit it, I really don’t want to hurt myself. Pain, it’s no fun. But when I think about the athletes at the Olympics or sports professionals, I know that they’ve done their fair share of hurting. In fact, when they say that they’ve been working at their sport every day of their life to get better, that’s not true. Because you can be absolutely certain that every single one of them has had some down time due to an injury.

They aren’t afraid to hurt themselves because they know that it’s one of those things that has to happen if they’re going to be the best some day. No one gets through life without some scratches and scrapes so you might as well stop trying to avoid it. Luckily though, our wondrous and amazing bodies are remarkably capable of healing. So unless you really do some damage, you’ll likely be back up and at it pretty quick.

Yes, no one wants to be hurt and that’s why we do everything in our power to ensure that doesn’t happen but it also should not be a reason to stop us. Take the safety precautions, think of everything that could go wrong and take measure to prevent them… and then do it. Yeah, you still might get hurt but then again, you still might end up being the best some day.

Be less afraid to hurt

No, this isn’t the same as the last point. Pain and hurting are often two different things. For example, many people, when they hurt themselves, they feel both pain and hurt… the pain from injury but also the hurt from the failure.

Hurt comes in many forms such as disappointment, depression, anger and then there are others such as when you lose a friend. But if we’re so afraid of these things that we avoid them then that means that we avoid doing things that could disappoint us or depress us or anger us… it means avoiding friendships. There’s a lot that we really should not be missing out on and certainly not because they might hurt.

Like all things, it’s going to happen but also, they’re going to require practice. No one knows how to be a great friend at first and no one knows how to do everything so perfect that they never get angry or disappoint themselves. You have to work at all these things and push through the hurt before you can conquer these things. And chances are, if you want them that bad, they’re worth it.

Also, the biggest difference between hurting yourself and feeling hurt is that one, anyone can do to you and the other you can only do to yourself.

Be less afraid to tell someone that you appreciate them

So often I am reminded that a job well done proceeds quietly, it’s only when everyone wants to contact you that you realize something is wrong.

What we really need more of in this world is for people to simply say, “you did a great job!” But this is something that many of us fear. For what ever reason, between these two emotions, it’s far easier to be angry with someone directly to their face than to be proud of them and tell them they did well. I suspect it has something to do with those awkward feelings from back in high school where, as teens, we were afraid to tell the other kid that we liked them. Something from that sticks with us and, as adults, we become afraid to tell someone we like what they did. Or maybe we just feel it’s unimportant because they’re doing their job.. what more do they need?

I don’t really know why it is but I see people actually shying away and saying no when others tell them that they should commend someone for a job well done. They are quite literally afraid to do it even though they would love for someone else to do that for them when ever they do a good job themselves.

All the other points are for you but for this one, do it for others. Be less afraid to give someone a pat on the back if they deserve it. It could really change that person’s who day… maybe even life. That’s pretty cool, right?

Be less afraid to take risks

Yes, this last one is rather cliche by now. We’ve all heard it. But the truth is that life really is short, only we don’t tend to realize that until later in life when we look back with regret. We think of all the times we didn’t do that we really wanted to do because we were afraid. It’s at this point we lower our eyes to the ground and realize that it was foolish to be so afraid. It was foolish to miss that opportunity for nothing because by the time we recognize all this… it’s too late.

We don’t have time machines and no one will truly be able to describe this feeling to you accurately while you’re young but there has to be some way to convince yourself that if you don’t take that risk now to do what you really want to do, one day it’ll be too late. You’ll have that regret to live with.

While that fear feels all too real right now, while right now, it paralyzes you and controls you… one day a much older you will think that it was nothing. You froze, for nothing. And you missed your chance, for nothing. And you’ll never get it back.

Don’t let fear rob you of moments. Those moments add up to your life. If you miss too many of them…

Like the children on that Minecraft server, be less afraid and you too will be amazed at the progress that comes from it.

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Autism Speaks is not and has never been listening despite their slogan

Autism Speaks, the largest and most powerful autism organization there is with enough real power to make a real positive difference.

Ah to dream.

I mean, don’t get me wrong. They have brought about some big changes and it can be argued that they have raised more awareness than pretty much anyone else in history. But at what cost? And using what methods?

Fear. A lot of fear.

They have a long history of fear mongering with videos that depict autism as a deep voiced child predator or as an epidemic that makes moms want to throw their children off a bridge.  They spend donation money on all those research studies that you hear about in the news that links “an increased chance of autism” to such things as tylenol, c-sections, premature birth, living close to a freeway, being old and on and on and on.

There’s really no point in rehashing history. I’m sure you’ve heard it all before. I’m also sure that you’ve heard about what’s happening this week. Autism Speaks is heading up a “summit” in Washington DC where they’ll call on the government to come up with a “national plan” against autism. Yes, “against” autism.

To this end, Suzanne Wright, a co-founder wrote this piece on the Autism Speaks website: http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action

This post, this whole “action plan” is deeply disappointing. It is disturbing, disgusting, shocking and all together frightening.

Putting in bold, in 3 separate places “this is autism” is not just wrong, it’s designed to make people fear autism, hate autism and want to do what ever they can to wipe it out. I’m sure they do not deny this. It’s very clearly the purpose.

It’s a fear mongering tactic.

Now, granted, there are some that have autism that truly are in a great deal of pain, completely incapable of any perceivable form of communication and really could do with some level of “curing”, not such that they’re not longer be autistic necessarily maybe but just so that they are no longer in pain and able to function independently.

That’s fine.

But to say “this is autism” and spout scary numbers and say that “these families are not living” is basically equivalent to turning millions of people into monsters that are to be feared. If they used a child as an example of.. well, an example… that would be different. If they quoted numbers of those that are specifically that bad off, that would be different. But they don’t. They claim “this is autism” over and over again. They attempt to speak for us all. They attempt to lump in those of us that do not need to be spoken for in their big monster horror film.

Sure, Autism Speaks can go to Washington and push for help for those that need insurance and aren’t getting it, they can push for more therapies, research and medication for those that need it.

But there should ALSO be those going along with them to make sure that all the other autistics are represented and accounted for as well. That all the families that have children that need those things but don’t see their child has a monster are represented as well. That all those that are unable to speak but are still able to express an opinion are represented as well. That everyone… absolutely everyone… is heard.

All of us… that is autism. 

There is something amazing to come of this though. The comments. The autistics, the parents, the community… all of those people outraged in the comments,  they give me hope.

This is the message to Autism Speams and to the government and to the world:
We are the voice that should be heard. We are the ones that you dismiss. We are the ones that you attempt to speak for and silence and remove. But we are the ones that matter. We are the ones that need to be a part of what directly affects us.

I have autism, my child has autism and thousands of others just like us are telling you, right here, right now, this is how it really is.

All of us… that is autism.

With that, there’s only one thing left to say:

Hey Autism Speaks… it’s time to listen.

Loving life, not silent, not to be feared, not to be spoken for.

Loving life, not silent, not to be feared, not to be spoken for.

PS

I’m including some other great posts/discussions on this because I believe, as we all do, that we should have the right and opportunity to speak for ourselves.

http://autisticadvocacy.org/2013/11/asan-aac-statement-on-autism-speaks-dc-policy-summit/

http://paulacdurbinwestbyautisticblog.blogspot.ca/2013/11/autism-speaks-kidnaps-policy-summit.html

http://www.mostlytruestuff.com/2013/11/autism-speaks-speak-son.html

http://adiaryofamom.wordpress.com/2013/11/12/no-more-a-letter-to-suzanne-wright/

http://www.blog.mamasturnnow.com/2013/11/12/dear-ms-wright-autism-speaks-and-any-others-out-there-who-may-read-this/

http://theautismwars.blogspot.ca/2013/11/a-mouse-that-roars-standing-in-defiance.html

http://autismandoughtisms.wordpress.com/2013/11/13/crisis-despair-and-everything-else-wrong-with-autism-speaks-call-for-action/

http://www.decipher-morgan.com/2013/11/autism-speaks-isnt-speaking-for-us.html

http://theconnorchronicles.wordpress.com/2013/11/12/autism-speaks-does-not-speak-for-us-this-is-autism/

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Autism Fears – Do you share these?

fearAutism awareness, for many, only includes the facts and figures, the stories of heartache and the “struggle” that the media likes to talk about so much. It gives parents so much fear in their hearts that some just outright refuse to have children just to avoid the risk of having a child of their own with autism.

I have my own fears. After years of seeing this “awareness” thing breed more and more fear, I’ve come to develop my own fears as a direct result.

  1. I fear that doctors will continue looking for a prenatal screening method to start giving mothers the option to abort a child just because it has autism. There are already far too many beautiful lives not being lived just because parents decide not to conceive just due to the risk.
  2. I fear that, should my son find someone wonderful to love, and marry and have a life with… that she may fear the thought of having children with him. Autism is genetic after all. The risk is automatically amplified. I’d hate, hate, HATE, for someone to hesitate in giving my son a family of his own because of their own fears.
  3. I fear that, as the ratios get closer and closer to 1 in 2 (they’ll never be that but they’re getting there), one day people may see my son as “one of those people.” Awareness is nice and all but there can be awareness without acceptance. And if that happens, if there becomes a division within society rather than an inclusion, my son may find himself having a tougher battle than I ever had.
    An individual is great. People scare me. And society, thus far, hasn’t given me much reason to think that they can overcome their fears.
  4. I fear more and more people will continue to replace the risks with much bigger risks such as feeding bleach to their children or refusing to vaccinate. People are willing to try anything. And by anything, I mean anything. You can only try “anything” for so long before you start treading into unhealthy territory.

Each April, with the increase in awareness efforts, I worry. My own fears set in. I see people talk about how hard it is. How terrible it is. What the numbers are. What’s worse. What’s not right. What’s not funded. What’s not available. And I see people afraid.

At least once a week, I receive emails from people telling me that they fear the risks. If they already have a child with autism, the doctors tell them the risk increases with another child. If they’re expecting a boy, the risks increase. If they have autism in their family, the risks increase. Risk, risk, risk!!

One day, I fear, the playgrounds will be empty. The classrooms will be vacant. I fear the future.

I used to fear the future anyway, for what it would not do for autistics. Now I fear it for what it might do. If the fear continues to grow.

My child already has the deck stacked against him. I’m afraid to think how much harder it can get by good people thinking they’re doing good things but not recognizing the fear they feed.

Awareness is good. Awareness is necessary. But awareness without education, without explanation, without acceptance… that’s what I fear.

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