Over protective parents, you need to stop doing this

By on November 15, 2014 in Autism

I’ve witnessed this in person, in social media and since starting my Autcraft server, I see it far too often. It’s a bit tough to explain exactly what “it” is but here it goes. I’m going to say “you” a lot. Don’t take it personally if it’s not how you are, I’m just being rhetorical.

Public Shaming

So many times, way too often, I see a parent upset that their child got in trouble on the server or at school or in social groups and their first reaction is to make a public spectacle of it. It’s a “screaming from the mountain tops” situation that requires calling out the people that punished their child for the evil organization that they must be. There are no questions, no information shared… just a call for blood.

I can not stress this enough but you just can not do this. I mean, yes, there are times you may be right and that organization needs to be exposed but most of the time, the majority of the time I’d wager, you’d probably not be so quick to take such actions if you knew all the details.

Children do get into trouble. That’s the nature of being a child. Sometimes it’s even your child. I’m sorry, but it’s true.

If you make a public spectacle of your child getting into trouble and demand details for all to see, all you are doing is shaming your child… in public. On the Autcraft server, we know that other players visit the forums, the fan pages, the twitter account… they read it all because they love the server. So when you post, saying that your child got into big trouble and you’re angry and you demand to know why, you are publicly putting your child’s bad behaviours on display for all to see and to judge and to feel strongly about.

Why do it? Well, I suppose you want everyone to see how they treated your child. Perhaps you want the public to rally around you and support you. Perhaps you just think it’s the best way to get answers. Even if any of these things happen, even if you get the anger fueled vengeance that you’re after, you have still left your child on display for the world to see. You’ve still made your child into a spectacle.

A Better Way

The Internet is an amazing tool to use when you want justice. If someone is wronged, you share your story, others will share it and it will come back to haunt the person that did wrong. It will provide the judge, jury and punishment that you seek. But in being such a judging entity, you have to choose more carefully what you are giving it to judge.

Your child may have done something very very wrong and now you are basically asking the Internet to judge them for it. Or your child may have done nothing wrong but is still going to become the focal point of a very ugly and nasty bit of drama for all to see and people will not remember it fondly, no matter who is right or wrong. They don’t even remember what it was about but they’ll remember your child.

There’s 2 things that I suggest you keep in mind.

  1. If you are angry, step away from the keyboard, walk away, take a deep breath. You have to gather your thoughts and feelings before you do something you may regret. Yes, those emotions may empower you to say the things you need to say that you wouldn’t say otherwise but it will also impair your judgment. You will make things public that shouldn’t be public, you will accuse people of terrible things that they may not have done. You will make assumptions that likely have a very different and simple explanation.
  2. Seek the details in private before you take anything public. If you need to know what your child did, ask in private and then take it public if still necessary after, but even then, I’d still advise against that. But if you absolutely must, if you do have a justifiable reason and people need to know about it, at least have the facts first. Don’t ask for those facts in public because you may not like what you just invited everyone to know. I am almost certain that your child wouldn’t either.

Your Child’s Drama is Not Your Drama to Share

There is not always a way to talk to someone in private but most of the time there is. You owe it to your child to seek those out before you make them a public display. Put yourself in your child’s shoes or better yet, think back to when you were a child. If you did something wrong, would you really want your parents to go on local television demanding details only to have a list of all the bad things you did show up on the 6 o’clock news?

I do get it, I’m over protective as well but in my duty to protect my children, I have to protect them from myself as well. I share openly about them here on my blog but I am very careful to never bring them shame. If they do wrong, they are spoken to, other parties that are involved are spoken to and we all learn and move forward. There is never ever any reason that I need for you or anyone else in the public to know about it.

Fight that urge to hurt the people that you think hurt your child. Your child might be innocent, they might not be, but making them a public drama story is not the way to go about getting to the bottom of anything. Share your drama all you want but don’t make your child’s drama public.

If you don’t want your child to be judged or bullied, stop giving people a reason to. You are their advocate and their protector. Stop making their drama public.

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The biggest thing to take away from Jerry Seinfeld’s autism statement

By on November 8, 2014 in Autism

Jerry SeinfeldIn a statement that made headlines and got mixed reviews amongst the autism community, Jerry Seinfeld revealed during an interview “I think, on a very drawn-out scale, I think I’m on the spectrum.”

I would like to explain why the reviews have been mixed before getting to what I feel is the biggest thing that we should all take away from this but I wouldn’t blame if you wanted to skip straight to it either.

Pros

Many people in the autism community see this as a purely positive thing. Jerry Seinfeld is well loved and regarded as a very successful comedian. In many ways this reinforces their notion that ‘if he can do it, anyone can’ or in other words, there’s still hope for themselves or their children.

Also, a lot of people like to use “you’re so autistic” or some variation as a form of insult but these same people love Seinfeld. So, if a comedian they really like turns out to be autistic himself, is it still the insult that they thought it was?

For most though, it simply is a +1 in the awareness and even acceptance column. Along with others such as Darryl Hannah, Dan Aykroyd, Susan Boyle and others, autism is getting the sort of attention that people only dreamed of as little as 10 years ago. I think most people would agree that to this day, no one really has any clue what autism even is unless it directly affects them such as having an autistic family member or having autism themself.

For a long time, the only time autism seemed to be in the media was when it depicted children hurting themselves or having a meltdown or being institutionalized. This was the public perception, or at least, the way it seemed to be for a lot of people. So the more successful people can come forth and say that they struggled but became successful anyway, the more the public will begin to see that it’s not always something to be ashamed of or afraid of.

Cons

When Jerry Seinfeld made the statement that he felt that it wasn’t a dysfunction but rather a different mind set, many people felt that he outright dismissed and mislead the pubic as to just how much of a dysfunction autism can really be. Even though the news stories aren’t all about children hurting themselves anymore, that is still very much the reality for many people and people like Jerry Seinfeld coming forward after being successful and making people think it’s glorious will not only diminish their struggles but make people forget about them.

Making a self diagnosis like he did takes away from the reality of the whole diagnosis. Children that need constant medication, supervision and support require a lot of funding and awareness but to have public figures just going around and self diagnosing themselves gives everyone the idea that they can do the same. Now anyone that’s a little shy or has trouble making friends will just go diagnosing themselves and spreading all kinds of inaccurate or even outright false information. There are a lot of disorders and disabilities and doctors spend many many years learning about them all to ensure that they don’t make any mistakes and yet they still do so for someone to just up and say they have a disorder is a slap in the face to those doctors and is also a very big leap of faith since in all likelihood, they could be right that they have a disorder but entirely wrong on which disorder they have… or they may have no disorder at all and are just introverted or something.

The Takeaway

The one thing that you really have to take from all of this is that he’s not talking about you. He’s not talking about you, your child, your situation, your experience or anything else to do with you… he’s talking about Jerry Seinfeld and only Jerry Seinfeld.

When he speaks about his mind set, his struggles and how he doesn’t view what he’s gone through as a dysfunction, he describes his experience. He describes what autism is as it relates to Jerry Seinfeld.

In our ever so strong desires to have our own story told, have we gone so far as to deny others their story if it doesn’t represent or even contradicts our own? In turn, shouldn’t our own stories then be denied as well when someone else finds that it doesn’t mesh with their own? How can any of us ever feel safe to share our stories and experiences and raise awareness in our own way if there is always going to be those out there that hate us for not representing them?

Speaking of feeling safe, is it any wonder that people are afraid to get a diagnosis? or speak out about autism? or say anything!?!? Is this really how we treat someone when they come to feel that they themselves are on the spectrum?? Is this what you want for your children?? To be attacked by half of the community that they suddenly find themselves to be a part of only because they are sharing who they are?? To be scared into silence?

For all we know, he could be wrong. He’s not a professional in health nor does it seem that he’s consulted with one, but of all the people that I’ve known to self diagnose themselves, not a single one of them did it because it would be funny or a cool thing to do. They do it after a lot of self reflection, a lot of deep soul searching and a lot of forethought. It’s not an easy thing to come to terms with and an even more difficult thing to share with others.

But isn’t a self diagnosis pretty much how the majority of official diagnoses ever come to be? That is, don’t we need to see the signs in our children or in ourselves in order to seek out an assessment? Yes, there are times when someone suggests it or our doctor catches it but the majority of people I talk to, people make that determination on their own, even if not entirely sure. It’s why we raise awareness! So that people can do that.

If my own son goes on to do well and become famous enough, I’d hate for him to be afraid to mention that he has autism because of how polarizing or hateful people within the autism community can apparently be. For one, I’d like to think that he’d be strong enough to deal with that anyway but more so, I’d hope that the autism community could move beyond things like this and accept that a person can speak of themselves and their experiences without judgement or attacks.

No, Jerry Seinfeld didn’t diminish autism or the public’s perception of it… he shared something personal, about him. That’s totally within his rights to do.

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Deconstructing the self-righteous – when parents try to kill their children

By on September 21, 2014 in Autism

deconstructI keep seeing some disturbing responses to the Kelli Stapleton case and I thought I’d address a couple of them today… a sort of, let’s clear the air, type of post.

Without wasting too much time, let’s get right into it.

Copycat Crimes

In a recent statement from ASAN (Autistic Self Advocacy Network), they condemned Dr. Phil’s interviews with Kelli Stapleton stating “We see a pattern of copycat crimes whenever there is a well-publicized case of a parent murdering, or attempting to murder, their disabled child … Dr. Phil had an opportunity to shut down this cycle of violence, and instead he chose to perpetuate it, as loudly and widely as possible.”

I have long seen many people get adamantly upset any time anything to do with autism is portrayed negatively in the media. Whether it’s adults that still behave as children, needing parenting for life or children behaving violently, no matter the situation, if it “makes us look bad”, the media is the bad guy.

I wonder though, where were these people when mothers were murdering their children that didn’t have autism? How come no one screamed about the risk of copycat crimes when these mothers killed their children?

I don’t know if you noticed or not but those stories are from 2014 alone and that’s not nearly all of them. Where’s the outrage? Why is there no one calling for the end of the journalists that reported these stories?

In our efforts to protect children with autism, do we now not care about any child that doesn’t?

There are more of these murders every year than there are months on the calendar but one murder attempt on a child with autism in the last year and suddenly we fear copycat crimes? No, we fear our own public image being damaged, nothing more.

The truth is that media attention is good. Whether your stance is that there should be more services (this will convince people of that) or if your stance is that she’s a monster for trying to kill her child (this will convince people of that too), media attention is not what leads to another tragedy like this, doing nothing is.

We must focus on figuring out how to prevent all of these stories from ever happening again. And crossing our fingers and hoping that no one becomes a copycat is simply not going to do it.

How can anyone sit there, in their big self righteous chair, and claim that a “copycat crime” is our biggest concern? How can anyone honestly sit there and try to tell me that the last mother to attempt to murder their own child did it only because they saw someone else do it on the news and thought “hey, I can do that!”

No, either

  • A – they are totally out of their minds, in which case, it was just going to happen no matter what or
  • B – they hit rock bottom and saw no other way out and don’t care in the slightest what any other mother has ever done. They just don’t.

Copycat crimes are not what this is about. It never was.

If you’re really worried about this happening again, let’s talk about real ways to prevent this from ever happening again.

Which leads me to…

Murder is never OK

I keep hearing this and as a statement on it’s own, I agree. However, this statement is a precursor to the rest of the intended message which is “now is not the time to discuss a lack of services or support or funding.”

I have one simple question then, when is the right time? During the lull between the last attempted murder and the next one? Or after the next one? Or the one after that? Do we look around and go “What? Too soon?”

Let me put it another way, if we never get around to discussing how we can lend help to the next parent that is reaching the end of their rope, for what ever reason, are we partially to blame? Well, no, I suppose not since “murder is never OK”, right? We can wash our hands of all blame.

I’ve seen it go even further than that. I’ve witnessed good people be verbally and brutally torn apart for so much as suggesting that they think events could have played out differently if the support had been there. I’ve seen people be accused of the most horrid and vile things simply for suggesting that they have it rough too and understand how someone could reach the point of murder/suicide.

Now, let me be clear, no one ever said they condone it or would ever do it themselves. They only said that they’ve been depressed and felt helpless and felt alone and felt abandoned and they understand what that murderous mother felt. Not that they’d do it too, but that they take the time for understanding… that they have shared a similar experience at least in leading up to the crime.

When a mother (or father) comes to you saying how hard they have it, how difficult their lives are, how no one is there to help, how no one seems to care, how there is no money, how there are no services… and when they say that they understand how hard it must have been for the last mother that was in the news, if you take that as an opportunity to beat that parent down with your words, to bully and chastise, to degrade and humiliate and to dehumanize that parent with all of your might…

What do you do when the parent you bully is the next parent you read about in the news? What do you do when you realize that you pushed them to it?

You do NOT get to throw your hands in the air and say “don’t blame me, murder is never OK.” No, you are not without guilt here. You are in fact a part of the problem. In fact, you’re worse than the lack of support, you’re the opposite of support. And if that mother that you’re beating on is the next one we read about in a headline, I will never ever forgive you. I will never ever let anyone forget what you had done and I will never ever stop reminding you of exactly who is to blame.

You know what? You’re right, murder is never OK. But that doesn’t mean we forsake our humanity and it certainly doesn’t give you a right to forsake yours.

Yes. A parent that tries to kill their child is a monster. And you’re right, murder is never OK. On that, we’ve never disagreed. It’s what comes next that you need to figure out with the rest of us.

Now, either learn to start helping people that need help or get the hell out of the way of the people that will.

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The most important lesson that I had to teach to the adults just as much as the children

By on September 19, 2014 in Autism

Communication UnderstandingDuring my time running Autcraft, I found myself constantly teaching people things. I taught children how to work together, how to be a friend, how to play the game, how to deal with bullies and so much more. I also found myself teaching adults as well. How to play the game mostly but also how to cope with troubling behaviours, how to extend their patience level and even how to switch a system which focuses on punishments to one that focuses on positive reinforcement.

The biggest thing though, the number one thing that I found myself constantly having to teach, reteach, remind and reinforce over and over and over again was, what I feel, the number one single most determining factor in the success of the server… communication.

When a player (child or adult) did something wrong such as swear, lash out, destroy someone’s property or quite literally anything else, it was my job to talk to them. Communicate.

I needed to find out why they did what they did, what they were thinking in doing it, what they hoped to accomplish and if they understood why it wasn’t ok. I had to explain why it’s not allowed and how it affects others around them. I had to reach an understanding. Communication.

Time and time again though, I’d have to remind the adults on the server of the same thing. The parents, the autistic adults, the SrHelpers and even the other admins. When patience levels would dwindle, when a behaviour became a repetitive situation… the desire to even try and communicate would grow less and less. But it was always crucial. It was always imperative.

Only through understanding the motives, the thought process and the intentions would we truly be able to understand the person and only then could we explain why it was wrong, or misguided or not appropriate.

Nine times out of ten, once we could see from their point of view, we could understand how they came to behave in the way that they did. And when that happens, a mutual respect is achieved. A bond is formed. You get them, they get you and they feel more comfortable with you as you actually take the time to “get them.”

This offers benefits for both parties. The person trusts you more and is more inclined to open up to you and come to you next time as they’re no longer afraid that they’ll just get in trouble and they know that you’ll take the time to understand them next time too and likewise, you yourself gain greater insight into why people do what they do, you learn to put aside your judgments and assumptions and you learn to keep calm and use your kindness and compassion to get to the truth.

Most problems I encountered were built on a foundation of assumptions, jumping to conclusions or simply not taking the time to understand, or worse, not caring too.

As people learned to take the time to talk, not just talk but to communication with the intention of understanding, everything just ran better and better. Players played together better. Staff managed the place better. Players felt more comfortable and open to approaching us.

Above all else, communicate. Take the time to understand. It’s not just a lesson for the children, it’s not just a lesson for the players, it’s also a lesson that many adults, parents and even the staff have had to learn… myself including. It’s also not just something you learn but something you get better at over time.

If you can take the time to do this, and keep doing it, all other pieces just fall into place.

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“Reversing autism” and why you’re not

By on September 9, 2014 in Autism

not_reversing_autismA news story hit my social media feed called “Could Early Intervention Reverse Autism?” and I just had to sign into my blog and start typing. I see this term all over the place… “reversing autism.” It accompanies it’s not so distant cousin “recovering from autism.”

First and foremost, let me just say I am not a doctor, scientist, geneticist nor can I see the future. That being said… no. You have not reversed autism.

Let’s just forget for a moment that autism is not a truck that you can simply throw into reverse and back up, there are countless studies out now about brain activity, wave patterns, synapse connections, brain size and more out there indicating just how different the brain of a person with autism functions in comparison to those without autism. Temple Grandin famously flashed her cerebral cortex on stage to the world.

Sitting down and teaching a child how to say “please” and “thank you” did not reverse any of that.

The fact is that teaching a child in a method that is more unique, one on one and specific to the individual person is going to get better results than tossing a child into a room with a bunch of other children and told to hope for the best.

A child that goes from a parent that knows nothing about autism except that it exists, to a trained, certified and experienced autism therapist is simply going to do better. Do better.

I put do better in bold because doing better is a very distinctly different from “reversing autism.” By teaching a child to say please when they ask for something, have you just altered their genetic make up, brain activity or fundamental core structure? I think not. But you’ve taught them to be kind. That’s nice.

To put it another way, stand up comedians spend years and years in small bars perfecting their routines, their delivery, timing and everything else. That doesn’t mean they are “reversing unfunny.” They were not funny, now they are. They didn’t reverse anything. They got better.

Musicians start out learning what notes are, they mess up scales during practice. They learn how to put chords together. Eventually, they make real music. They didn’t reverse anything. They got better.

Reversing autism is a very misleading term. It’s also a hurtful one. I’m an adult with Aspergers. I learned how to socialize despite hating it, I learned to get people to like me even though I didn’t want to be with them at the time. But nothing about me was reversed. I did better.

That’s a bit of a slap in my face and the face of anyone that works hard to make real progress. To think you can just remove something and presto, they’re a better human being. No, it was hard work, a lot of dedication, real effort. It still is! To strip that all away and say “oh, this is just how you are once we reverse autism” is a real shot to the heart when no, that’s not true at all.

Nothing went backwards in my head. It went forward. I adapted, I learned, I grew. Children do that. Especially with the proper guidance and trained professionals to help them do so.

Stop making it sound like you’re reversing a fever or a rash or an infection or cancer… you’re not.

You’re helping someone do better.

Let that be your headline because that is something to truly be proud of.

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