Tag Archives | acceptance

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

By on April 1, 2015 in Autism

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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Destroying the term “special needs”

By on March 24, 2014 in Autism

uwe-quote-jpg“Special needs children” is the all encompassing term used to describe all children that have a disability or disorder. What it implies is, and this is where people start to see “special needs” people as a burden, is that special accommodations are needed just to make life easier for “special needs” people.

An example of this is when a library spends a bunch of money to put in a ramp along side their entrance stairs so that a person in a wheelchair can get in. An architect, disability specialist/advocate, contractor, construction team and a whole host of other people and costs are all put towards getting in this ramp to help out a few out of the thousands of people that visit that library each day.

As more and more libraries get on board with his “affirmative action”, we start to see more and more libraries with this “convenient” ramp at it’s entrance and we smile to ourselves as society is finally starting to do something for these poor “special needs” people that need that little bit extra.

Yuck.

Let’s flip this around and look at it from another point of view.

Imagine a world where no one was considered special but instead, as people. And as the first library starts to go up, the designers and planners say to each other “well, we have blind people so there’ll be braille, we have people in wheelchairs so there’ll be ramps with stairs over here, we have people that require animal assistance so we’ll make sure the floors are safe for them…” and on and on. The second library follows suit, then the next and then the next.

No one thinks twice about it.

Then one day you’re travelling to a place you’ve never been before and you come across a library that has no ramps or braille or any of that stuff. How shocking would that be?!?! What an abomination that would be to every ounce of common sense that you were raised with in believing that libraries were just made for everyone… not to exclude anyone.

No one would question this library for it’s lack of accommodation… they would judge it, quite harshly, for it’s shutting people out. Not “special needs” people, but people. Just… people. 

If only that could be how it is, right?

The library example is just one example out of billions but in the end, what it comes down to is that no one has “special needs”, we just have needs.

I have needs, you have needs, we all have needs. We all want access to the same things, we all want to read and watch and do the same things. Some people just do it differently than others but that doesn’t make it a special need. It makes it the same need that someone somewhere hadn’t thought about putting into their designs or, worse, just left out of their designs because they either didn’t care or didn’t want to spend that little extra on “accommodation.”

We can’t go back and tell those libraries to get it right the first time, although it really would be great, but we can work to fix these things so that future generations don’t have to think of anyone as needing something special done to give them special help to their special need.

One day, one generation of people will find it odd to have a movie without a subtitle option, or a library without ramp, or a debate/discussion without transcripts or sign language accompaniment, or a bus without wheelchair access or a building that doesn’t allow guide dogs or….  well, I could go on. One day, instead of finding it pleasantly surprising to find places that have all these things, people will find it disgustingly surprising to find a place that doesn’t.

That probably won’t be in my lifetime but it’s a good dream to have. I just wish everyone shared it.

Get it right in the first place and there’ll be no more “special needs”… only similar needs that people achieve differently.

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

By on February 11, 2014 in General

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:

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Why my child needs to know that he has autism

By on September 18, 2013 in Autism

I am an adult with Aspergers but I wasn’t always. Before I was diagnosed, at 36 years of age, I was an adult that was very confused, I had no self esteem and I was always extremely depressed. Before that, I was a child that was very confused, with no self esteem and depressed.

For the better part of my life, I struggled with my work, relationships, school, my appearance, friends… let’s just say that I struggled with everything. I hated life. But the part that I hated most was the feeling where, it’s not just that I didn’t fit in, I was the same as everyone else but I simply could not make anything in my life work right no matter how hard I tried and no kind words, medication, self help books or anything else could fix it. No one could tell me… what was wrong with me?!?!

Now, before I continue, if any of my family is reading this and it starts to make you feel like you let me down, don’t. You didn’t know, I didn’t know, no one knew. And considering how mixed up and down I was feeling that whole time and the fact that I’m still here, I’d say you did great!

My 3 greatest fears in life, listed least to most are:

  1. Death
  2. Being alone
  3. Feeling alone despite being with people and not knowing why

AloneWhen my son was first diagnosed with autism, I came to realize that many of his experiences mimicked my experiences. I wasn’t just reliving my youth the way a parent does through their children, I was reliving my heartaches. A lot of my past was suddenly explained to me as I started to put the pieces together. This was amplified a hundred fold when I was actually diagnosed. To this day I don’t know why but somehow, making it official, really opened my eyes to a lot in my life that had, up until then, remained unanswered.

I was bullied, I had few friends, I had bizarre obsessions and habits, I never wanted to leave my room and I remember every detail of every event that caused me pain, whether physical or mental. For example, I remember how I got the scar on my knee when I was 2 and I remember very well how I felt when my mom told me that I told an inappropriate joke before I was old enough to know it was an inappropriate joke. I felt terrible!

Still, I can take all that and more (which I am not about to list on a public blog) and very confidently say that it doesn’t even come close to the very overwhelmingly sinking and crushing feeling of being so completely and totally alone while with people that love you and want nothing more than for you to just feel good about yourself for once.

If this was a YouTube video, I’m sure most of their viewers would read that last bit and then comment to tell me that I’m just a moron and should just smarten up and listen to those people.  In a way, this is a good thing because it tells me that those people, and probably most people really, will never know just what that feels like and how impossible it is to do. That’s good, I think. I would hope that most people never really understand how that feels.

I’ve talked to a lot of people that are either waiting to or hoping to never tell their child that they have autism. They fear labels and they do not want to make them feel like they’re different or that there is something wrong with them. I get that, I really do, but take it from someone that’s been there and done that, they know. Believe me, unless your child is still two or three years old, they know.  But they can’t quantify it nor explain it and if it affects them even a bit like it did me, then they most definitely do think that there is something wrong with them.

Now, I want to stop right here and say that I know full well that all people are different, all lives are different and just because my upbringing was as I describe it, it is in no way a certainty that anyone else’s life would be the same. Still though, in my acceptance of this fact, I must also insist that you accept the fact that maybe, just maybe, it could turn out the same.

When you feel like you can’t ever have friends, you can never do anything right, everyone gets to be happy except you, talking to people comes easy to everyone but you, you’re a bully magnet, you can’t do or say anything right and life in general seems to not work for you, at all, ever, you KNOW you are different. You KNOW that something is wrong with you. But what you don’t know is why. And not knowing why is the scariest, most lonely feeling in the world.

I need to base my decision on my previous experience. I need to know that my greatest fears and feelings are something that I do not pass on to my son. I know now that I can’t protect him by keeping the truth from him.

My child needs to know because not knowing is a pain that I could never wish on anyone.

What he does with that knowledge is up to him. Will he come to accept that there really is nothing wrong with him, as I have? Having autism and being different doesn’t mean there is something wrong with you.  Will he seek out guidance and therapies to help him with friendships, work, love and life? I do not know. But at least now he’ll know what kind of help he’s looking for. I didn’t have that.

My greatest wish for my son, and everyone really, is to accept and love yourself. But how can a person accept and love them self if they never really know who they are?

 

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Find your own voice

By on June 19, 2013 in Autism

Your voice mattersOn a blog dealing with autism, the title may put some on edge. Not all autistics can speak verbally and even many that can or find another way are often not heard or even ignored.

But that’s that not really what I’m trying to address right now. Instead, I’m talking to you… the one that comments or shares what I write and says “he says what we all think” or “this is so much like how it is for me”. Don’t get me wrong, I appreciate that, but still, I encourage you to find your own voice. Don’t just share what I write and say “ditto”, but to create your own or to still share mine but to add in yours on top.

This is also to those that say “that’s not how it really is because my child is different” or “you give people a false impression with your feel good BS”. To you I say, go find your own voice. Leave mine alone.

Here’s the thing, we have all heard the one classic autism quote, the one that defines everyone by defining no one: “If you meet one person with autism, you’ve met one person with autism.” And we all know it to be true. And yet we still strive for commonality and relatability and we still hate those that state something to be true when it’s so obviously not for us. Well, ok, maybe only a small few hate. But they’re loud.

We have parents that resent everyone comparing their child to Grandin, Fleischmann or *shudder* Rainman, we have parents hating other parents because they’re not positive or negative enough, we have autistics hating parents because they speak from a parents perspective and don’t consider the child’s and then they hate parents for speaking of the child’s perspective when they can’t possibly know what their child is thinking. We even have parents hating autistics because autistics are representing autism differently than those parents wish they would and we even have autistics hating other autistics for making people think that all autistics are like them.

There’s more but I think that is a good enough list to suffice. I would hope that you can see where I’m going with this.

Ultimately, this all comes down to a form of silencing. People that see autism as being a negative thing will want me to stop speaking about it in a positive way. People that see autism as a positive thing will want me to stop speaking out about the negatives.

This is so very wrong. Very very wrong. I mean, I get it. I understand that it’s not how it is for you. But that’s YOUR story to tell. I’m telling mine. You tell yours.

The fact is, we’re equals in this world. Which means, that if I have to stop being so positive, then you have to stop being so negative and thus, no one learns anything. Where as, if I continue being positive and you continue being negative, people will learn everything. The same thing happens with parents writing from a parent’s perspective and autistics writing from an autistic’s perspective. Or care givers and teachers writing from their own perspectives.

See how that works?

Now, to those of you that actually like what I have to say and feel it’s what you would say anyway, I am trying to be fair. If those that disagree should tell their own story, then so should those that do agree.

The reason? We’re all different. Our children are all different. Our stories are all different.

I’m not saying that you have to start a blog if you don’t already have one but rather, just tell people. Face to face, in social media. What ever. Even if it is by sharing what someone else writes, include your own story along with it. Explain how your story differs, not just how it’s the same.

Only by hearing every story can people understand just how incredibly true and important the grand scale of “If you meet one person with autism, you’ve met one person with autism” really is.

I don’t want to be your voice whether you like what I have to say or not. I want you to share your own story. With me and with everyone. Whether I agree with it or not. Whether anyone else agrees with it or not.

Stand up and shout it out! Type it, write it, sign it, morse code it… in what ever way you can express anything to anyone, I encourage you to do it as best you can and as often as you can.

I won’t be silenced and I won’t silence you.

This is my story. I’m eager to hear yours.

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