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Dear news media, this is how you fail the autism community so badly

The autism community’s biggest enemy, by far, is the news media. How so? Well, first of all they report the “terror” of autism, the “suffering” of autism. Secondly, they take any report that says “We put X and Y in a room together and found a Z% correlation” and create sensationally outrageous headlines such as “Z is caused by X!!!! Your children are doomed!!”

If you are not a part of the autism community, I can understand how this must appear to be an over exaggeration. If you are in the autism community, thank you for recognizing that it is, in fact, not an over exaggeration.

To give you two prime examples of how the news media agencies fail us, we only need look at what is happening this week.

“Significant” Link

Study: ‘Significant’ statistical link between mass murder and autism, brain injury” - http://www.washingtonpost.com/news/morning-mix/wp/2014/05/21/study-finds-significant-portion-of-mass-murderers-and-serial-killers-had-neurological-disorders-including-autism/

This article names all sorts of serial killers that you either hate or will hate after reading about them, names like Adam Lanza, Seung Hui Cho, Jared Loughner and Jeffrey Dahmer. Having just come off the headline of “significant statistical link between mass murder and autism”… can’t you just feel that emotion taking over? 

Oh wait, we skipped this one minor paragraph tucked away in the middle somewhere that has little importance… it’s this one:

The researchers stressed the study is “clearly limited” by the “anecdotal and speculative” nature of some of the published accounts. Lead researcher Clare Allely, of the University of Glasgow, emphasized the study did not suggest those with autism or Asperger’s are more likely to commit murder. “We’re not saying people with autism will be serial killers,” Allely said, adding “it’s way too early to make any statement like that.”

Hey wait, that does seem important, doesn’t it?

To me, a more appropriate headline would have been “Anecdotal and speculative information researched on autism and mass murder finds it’s way too early to say people with autism will be serial killers”.

Well, maybe not, it’s a little long and granted, it doesn’t pull in the readership that “significant link!!!” will.

Now, in my own research, I discovered that the number of homicides in the US between 2000 – 2010 was 165,068. 

This week, one person with autism plans a murder and suddenly we’re having studies about there being a potential link? Where are the studies that say “hey, 165,000 murders were by people that had no disorder. Could be a significant link!”?

Bullying Autistics Leads to Murder

This second bit of news also bothers me on another level.

Santa Barbara Shooting Suspect Calls Loneliness ‘Darkest Hell’” - http://abcnews.go.com/US/santa-barbara-shooting-suspect-calls-loneliness-darkest-hell/story?id=23855994

In this article, they write

“Schifman said Rodger was diagnosed as being a high-functioning patient with Asperger syndrome and had faced bullying through much of his life as he had trouble making friends.”

Now, I talk to autistic children every single day and at least 2-5 of them each week that feel like committing suicide due to the amount of bullying they are subjected to.

There are literally hundreds of autistic children dying each year due to bullying.

Why?!!? Why are there 100′s of children committing suicide due to bullying each year and no one cares?

But 1 child plans to commit murder due to bullying and suddenly this is national coverage? And autism is a big part of the story?

This is heartless and devastating to those of us with autism, those of us in the autism community and to your audience in general.

Stop Hurting Us

Stop Hurting Us

You Are Hurting Us

Listen, I understand that you need to get enough ratings, you need enough of an audience to “rate” against your competition. But please stop!!

I am begging you, I’m am pleading with you and I am insisting that you stop making autism out to the bad guy.

We are not mass murderers any more than non-autistics. We are not suffering any more than anyone else with depression or bullying. We are not this evil force that you paint us out to be.

We are children, adults, parents, friends, neighbors… we are your brothers and sisters.

You need to understand, you are hurting us. You are causing the suffering that you report about by reporting the way you do. You have become the bullies and you are bullying us.

Stop the sensationalist headlines. Stop burying important facts. Stop singling us out of a crowd of thousands and saying we all must be like that one in the crowd. Stop making us that thing to be feared.

Stop hurting us. Please just stop hurting us.

If you can’t find it in your hearts to start helping us, at least, please, stop hurting us.

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Adults are bullied too. Don’t let it happen to you.

Every day I see people, grown up people, being bullied online. Only they don’t know that they’re being bullied.

What’s worse is, I see people, grown up people, being bullies online.  Only, they don’t know that they’re being bullies.

Chances are, if you’re in the autism community, you’ve been bullied. Yes, people get bullied online every day no matter what community they’re in. But when it’s parenting, especially special needs parenting, either you’re very new to the experience or you’ve experienced bullying.

Parents, instead of receiving suggestions, advice, education… they’re demonized, accused of being potential murderers, abusive, future stealing wrong doers. Every decision, choice and even every little word they say is put under a microscope and ripped apart. A parent receives an autism diagnosis for their child, visits an autism Facebook fan page and asks a simple question. The next thing they know they are in tears, hating themselves and feeling worthless. Sounds extreme? I’ve seen it happen. And it is not ok.

Autistics, instead of being heard are told that their opinion doesn’t matter because they’re “not high functioning” or “not low functioning” enough. They’re told that they need to be cured or worse, that they never should have been born at all. When the media rolls out in search of someone to talk to about autism each Autism Awareness Day, who is it that they search for? Parents. And if they do look for autistics, they seek out the children that are behaving the worst… the ones that will make headlines and drum up sympathy.

It is even worse if you’re an autistic parent. Believe me, it makes absolutely no sense because to me, it seems to me that the smart thing would be to get the perspective of someone that has been an autistic child, is now an autistic adult and also the parent of an autistic child. Who could have more insight into all angles than that? But sadly, no. Instead of seeking autistic adults out for guidance, they are bullied by all comers. Other self advocates, other parents, the media… all of your choices are wrong, all of your opinions are invalid.

Now, don’t get me wrong. Not everyone in the world is a bully. Not every experience is going to go that way. However, as I said, unless you’re very new to the community, you’ve experienced it in some form or another.

What I’m saying is, you need to not be the victim. You need to not let yourself be bullied. You need to stand up. Whether it’s to stand up and not take it, to stand up and walk away or stand up and just declare that you won’t take it anymore, you need to stand up against bullies. Prove to your children, all children, your fellow adults and everyone that bullying doesn’t belong in the autism community or even on the internet anymore than it does in our children’s schools.

In many ways, this is worse than what children get in school. I’d rather take a punch in the face than a bunch of other parents or self advocates telling me that I’m a terrible parent.

But just like the punch in the face from my school days, I don’t have to take it. Neither do you.

Acceptance can not be achieved by bullying others. Lack of acceptance does not bring about more acceptance. Anyone that professes to want acceptance for all but bullies you into it is lying, or strongly misguided. Not one single person on this entire planet that truly wants to be accepted or for others to be accepted would ever, in a million years, attempt to make you feel like you’re worthless. They would never ever want you to feel like they feel… bullied.

Why do some people hate me? Why do some people attempt to bully me? It’s because I refuse to believe that their brand of bullying is acceptable and furthermore, I refuse to join in. I will not be a part of it. Even if I do not agree with someone else’s opinions, methods or decisions… I will not bully them for it.

Don’t ever let yourself be bullied but more so, please, please please… do not ever find yourself being the bully either.

We are in this together. The bullying stops now.

It’s my hope that you share this with everyone, far and wide… if not this blog post then certainly the message; do not let yourself be bullied. You do not have to feel that way.

Please watch and consider this:

Comments { 6 }

Laying the blame

blameThere is so much blame going around, I seem to find it everywhere.

There are parents that blame vaccines or the environment or doctors for their child’s autism. There are some autistics blaming their autism for their inability to succeed. There are some parents blaming autistics for giving people a false impression to people of their child and then there are autistics blaming parents for giving people a false impression of autistics in general.

The worst is when I see advocates (you know, the people who actively try to reach as many people as they can and even influence people in some way) that blame each other for something or another. Especially when someone actively goes out of their way to either visit someone in their home (their blog or place they advocate) and attack them there or to write on their own about those other people.

I’ve written several times about how division in the autism community saddens me and I’ve felt that it’s far too depressing and, quite frankly, pointless to continue writing about. It would seem that there will always be division, so wishing for it to change just isn’t going to make it so.

I’ve grown a lot since I started writing though. I mean, I still believe now, as I did then, that people should not be fighting and should work together instead. However, now I realize that wishing for something isn’t going to accomplish anything. Even some positive words, a moment of enlightenment, won’t change anything.

What I have found, what I believe, is that the root of the problem is blame. We’ve become so frustrated with our own situations that we need to find someone or something to blame.

We can’t work together and we can never come together as a community until we can learn to stop blaming each other.

I’ve come to realize that blaming someone for saying or being a way that I don’t agree with is no way to resolve a situation. Blaming them for affecting my life or anyone else’s life is no way to bring about peace and unity.

The best that I can do… the best that I can be… is to focus on me. Improve my message, make my message a message worth hearing. Make what I have to say, better and more worthwhile than the message that I disagree with.

The best way I can bring about positivity is to let go of my own negativity and stop laying blame. If someone is wrong or is doing something wrong, they’ll have to live with that and it’s consequences whether I say anything or not. And if I do play the blame game, I myself will have to live with that and it’s consequences too.

If you can’t climb the stairs, don’t blame the stair maker. Find another way. If you can’t see the words on a page, don’t blame the author. Find another way. If therapy isn’t going your way, don’t blame the therapist. Find another way. If your finances aren’t going your way, don’t blame your job. Find another way.

Focus on you and how you can be the best that you can be. Over come the obstacle, don’t focus on who’s to blame for the obstacle.

There is zero success in blame. Your success will come from realizing there is no blame, there are only challenges to better yourself by.

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A life taken away

take a chanceI was talking with a friend about cancer, how it may take her life. It reminded me of my grandfather who’s life was taken by cancer. It’s… not a fun subject.

But I got to thinking about what exactly that means, “take a life”. Because, the more I think about that friend, the more I realize, that phrase does not mean what I think it means.

Life is so much more than a breath or a heart beat. It’s the culmination of all things experienced, affected, impacted, touched and shared from the moment you came into existence until… infinity.

You probably thought I was going to say until the day you die, didn’t you? But your life doesn’t end there, does it? Do people suddenly forget who you are? Do they suddenly forget the times you had together? Do people who learned something new from you suddenly unlearn it? Do they ever stop missing you?

Life isn’t breathing, it’s being.

Your first kiss, your first point in sports, your first risk, your first love, the first smile on your parents face when they see the pregnancy test results, the heartaches, the successes… all of it. And not just for you but for those all around you. Those who shared in those smiles, the person you kissed and all those lives that were enriched just by you being a part of it.

Yes, your future, the things you have yet to do can be taken from you. But that’s not your life either. That’s a bucket list. And it is tragic. I can not lie. But it can not, in any way, diminish the life you’ve lived nor the life that will continue to live on in others, in time and in space by you having existed and hopefully, being the best you that you can be.

Think of the butterfly effect. The theory that, if you go back far enough in time and kill a butterfly, that it could spark a chain reaction through time through cause and effect that completely and totally changes the way things are now.

That’s fine for the past. But today, right now, you are that butterfly. And your life, you, you have affected all there will ever be for the future.

Your breath and your heart beat can be taken from you. But your life can not.

Don’t ever let the thought of your life being taken away from you get you down.

Because so long as your life has been, it will always be.

And that makes you pretty spectacular.

So live your life, while you can and do all that you can with it. Because no one and no thing can ever take that away.

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With autism, consider making the path your goal, not the goal your path

Read a “how to be successful” book and it will tell you to start with a 5 year goal, then break it down to 5 individual yearly goals, then break those down to monthly goals, then to weekly and eventually to daily goals. The idea being that you set your sights on where you want to be and break it down to the steps you need to take to get there.

When our child is diagnosed with autism, we tend to focus on them having a family of their own one day, a steady job and all that “normal” stuff we think will be what makes our child a happy grown up some day. Then we deconstruct that backwards into smaller goals. With autism, it’s not as easy to break down into daily or even weekly goals but that’s what we’re thrown into by way of scheduled therapy sessions, ABA and strict routines.

And when something doesn’t appear to be working, we change paths. Our focus being the goal no matter which path we need to get there. Rightly so, I mean, this is our children we’re talking about. A parent does what ever a parent needs to do for their child.

When Cameron was diagnosed, we were faced with a lot of wait lists. We were in the right place to get the best therapists and everything that Cameron would need but we’d have to wait until after he was 5 years old to get it. We searched around and found a school with a new autism program where a select few classes are specifically for autistic children.

We were faced with a choice: wait for what we were told are the best services available or move, losing most of everything we had, and get immediate help but unsure of how well it would go. Back then, all we knew was that it was a new program at a little school in a little town.  So, start immediately with the unknown or wait several years for the best.

I look back at it as more than just a choice of starting then or starting later, I see it as choosing between the end goal and the path to get to that goal.

Focusing on the end goal, to me, is a way of focusing on the problem. You still love your child and want what’s best for them, but you’re so very focused on removing what ever road block is in front of them that the path to reaching that goal becomes unimportant.

You spend your time talking about the problem, dwelling on the problem, asking for advice on the problem, reading about the problem, writing about the problem, trying different things to solve the problem… eventually the people close to you hear you talking more about the problem than about your actual child. They’d never tell you that and it would never feel like that but let’s face it, you become a bit of a downer dude.

In this way, the problem becomes your path to the goal. “What ever it takes” is driven by the road block, by your drive to over come that road block and reach the end goal.

Focusing on the path, however, allows you to still get to your end goal but the way in which you look at and approach the situation can be drastically different.

Consider this, that the one key constant between now, your end goal, all of the road blocks, all of the successes and everything in between, is your child.

Given all of that, if you could choose only one thing to put your focus on and keep it there, what would it be?

It’s not that I suggest giving up on anything, only shifting your point of view a bit.

You can’t force the future to be what you want it to be, you can only do your best here and now, in the present and trust that it will be enough to take you to the future that you want. What you have right now are not problems to be solved in order to get the outcome you desire.

You have a child. A child that is waiting for you to line up some cars too. To spin them on their roof. To get more building blocks for sorting by color. For sitting down and drawing trees, or trains or what ever they love to draw too. A child that loves you so very much even if they can’t find a way to express it to you. A child who doesn’t want you to think they’re a burden and certainly not a problem for you to solve.

The path to the goal? It’s a kiss on the head as they sleep. It’s a rare hug out of nowhere. It’s a favorite blanket that you always remember to have for them. It’s giving them the freedom to leave the dinner table in between bites if they have to. It’s in reading the same bedtime story 5 years in a row.

By the way, that school that we gave up everything for? Best decision ever. The teachers, EAs and entire school is just so kind, caring, nurturing and understanding that I believe Cameron never would have come as far if we had gone to “the best”.

We focused on our child. In letting him be a child. In joining him on his path rather than forcing him to take our path.

If you want a new house or a car or a boat, make yourself a plan of action and focus on your goal.

If you have a child with autism, make yourself a goal and then focus on your child. With your love and support, your guidance and encouragement, they’ll lead you to it. You’ll just have to follow their path.

path_rainbow

Make your path the goal

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