Category: Advocacy

Understood

Too often people confuse personality with disability. I’m a person. I am not a disability. Autism is as much a part of me as my love of writing. I can do things much like everyone else. It’s sad that I have to say those things to people. It’s not enough to be aware of Autism. You must understand it. You must understand it affects all of those who are autistic differently. To be understood is something that every person on the planet wants. I want to be understood.  I for one enjoy being around other people.  Other autistics prefer to work in solitude. We are all different as the colors of the rainbow. We are not like Xeroxes where we all look alike or think alike. Humans are all different. And human is what we are.

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I am me.

Being honest and telling people that you are autistic is a lot like coming out of the closet. Its not an easy thing to do. People don’t always know what to make of it. It’s funny how when you do tell people some of them who you thought you were there friends shun you out of ignorance. Then there are the people who treat you as if you have a disease and claim they want to cure you. They don’t accept you for who you are. 
I have to choose how and when and if I tell a person that I am autistic merely out of self-preservation than by a desire to be understood. The truth is telling people is never easy and I never know how they’re going to react. Sometimes I get the oh my friend/child/neighbor has it response. When that happens I feel a lot more comfortable. Even those people may not understand Autism. I don’t expect them to understand it. I expect them to understand me. We are all different. I am not like your friend/son/neighbor who is autistic. I am me.

The Advocate – Love and loneliness

The column for which I won second place for best personal experience story from the Columbia Scholastic Press Association in 2007.  A fact I am proud of.  The Advocate was the first weekly column in a campus newspaper, The Daily Titan, describing life with Asperger’s Syndrome.

Love is perhaps the most commonly discussed, pondered and philosophized subject in the world. For those involved with
the treatment of Asperger’s, as well as those who have it, love is still a topic for discussion and thought.
The city on a hill is the perfect metaphor to describe the Daily Titan newsroom. With its location on the sixth floor of College
Park, it is like that city ona hill where students, through hard work, can enjoy the fruits of their labor and all the academic and personal
successes. Yet it can definitely be lonely at the top. Success, in my estimation, is meaningless when there’s no one to appreciate it.
With Valentine’s Day coming up, love is on the minds of everyone.With Asperger’s, the discussion is less philosophical in nature. The conversation is more about “can we love?” as opposed to the very nature of love itself.

The question is irrelevant.

Can you breathe?

We are capable of love like any other human being. The ability to love by both Aspie, (adiminutive name for someone with Asperger’s) and non-autistic alike is what makes us human. Aspies such as myself choose to express love in a way that does not fit the ordinary definitions of love. Even those who are not autistic differ in the ways they express love and show affection, but it does not make the feelings less real or less wonderful and beautiful. Love created the universe, which is reflected in the eyes of those we love. Being a male student on a campus that is 64 percent female does have its advantages – to which the remaining 36 percent can attest – but on the other hand it has its disadvantages.

Let’s face it, most autistics are men and most men never really understand women, least of all autistics. I choose to express myself through words and actions, and I have found saying “I love you” is much more powerful than giving out candied hearts on Valentine’s. Words are more powerful than any gesture. Yet love is something that anyone wants and deserves. People assume that whenever a disabled person mentions the things they deserve, they often mistakenly assume that we deserve those things because we are disabled.

In contrast, it is not because we are disabled but because we are human.
As I spend my time in this city on a hill, the world seems that much bigger and just that much more isolated. Perhaps being such an extreme man has had a part in that. But that discussion will have to wait.

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Welcome to Aspie Land…and what do I mean by neurotypical?

This blog title was chosen for a reason. There is often repeated phrase that  occurs among people with Asperger’s is that we feel like we are from a different planet. A good example of this is the website WrongPlanet.net which was created by Alex Plank. The site itself is meant to be a community site for people with Asperger’s. The title of the website itself is representative of the idea that I mentioned about Aspie’s sometimes viewing themselves as being from a different planet. The idea has become widespread among Aspies, so much so in fact that a culture has developed based on this widespread view that we are not like people who don’t have autism.  We have even developed a term for non-autistic people: neurotypical. Many members of the autistic community believe in neurodiversity.

There are two groups of thought in the autistic world. Those who want to cure autism and those who believe in neurodiversity. Mike Stanton in “What is Neurodiversity?“describes it this way:

“The idea of Neurodiversity was developed by autistic people in opposition to the pathologizing model. According to them autistic people are not disordered. They have a different sort of order. Their brains are differently wired. They think differently. They do not want to be cured. They want to be understood.”

Up until the 1980s mothers were blamed for the autistic behavior of their children. Autism was often called Refrigerator Mom Syndrome. The focus eventually shifted to a more genetic component. It was from there that people began looking for a cure for autism. However, many people who have autism began to feel that they should celebrate their differences especially the differences in our brain functions from people who did not have autism.  As with any group in order to  differentiate from the group they are separating from by labelling them. The name neurotypical basically refers to someone who does not have autism. The autism community chose that word because the word normal had too many  negative implications. Neurotypical as a term rejects the idea of  a normal brain because that would mean that anyone who has autism has an abnormal brain. Also what would constitute a normal brain remains to be determined because brain functions depend on factors that are relevant and different for every person.

I belong to the neurodiversity movement because I am proud of what I have accomplished and I am proud of the unique way in which I look at the world. I don’t refer to myself as being neurodiverse as an individual. As part of a community I am neurodiverse. I can no more be cured of autism more than  cows can fly upside down. I am not certain I want to be cured. Too much of the discussion of autism revolves around finding a cure as if I and all other autistics have a diseased brain.

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Autistic blogger writes from the heart The Orange County Register

This appeared in The Orange County Register today on A1.

Autistic blogger writes from the heart

By ROBERT MORAN / FOR THE REGISTER

We are not all the same.

The belief that all autistics are the same is still one of the biggest misconceptions that autistics have to deal with.

Now that the Centers for Disease Control has determined that the diagnosis rate of some level of autism is 1 in 88 people, the numbers may seem startling, but it just means that there are more accurate methods of diagnosing autism. Better and more accurate methods, in this case, are important because no two autistics exhibit the disorder in the same way.

The new diagnosis rate has indirectly shown the world that autistics are all different.

I am not Rain Man. I can’t count cards like that. Sometimes I wish I could do that though. But my only prodigal ability has been to put pen to paper, which I have been doing since I was 9 years old.

I am writing my blog, Welcome to Aspie Land, not for myself. I am doing this because I believe the perspective of an autistic adult is as just as important as the perspective of a parent of an autistic child.

Too often the discussion is one sided and autistics are often not included in it. I am writing this because I want to demonstrate the diversity community. We all come from various backgrounds. I am a Roman Catholic. I have some autistic friends who are atheists. I am of French, Irish and Mexican descent. I know a few autistics who are Asian and some who are African American. We are as diverse as humanity.

Yet some people still operate under the assumption that we are all the same.

I recently graduated from Cal State Fullerton with a degree in broadcast journalism. I work as desk assistant at ABC News at their LA bureau. I am one of the only people that I know of who is autistic and pursuing a career in journalism.

I am writing this blog to not only promote an understanding of the diversity of autism by promoting awareness, I am promoting acceptance.

Acceptance is what every human being looks for and autistics are no different in that end. I also want to inform people about autism, but not from the perspective of a parent or a psychologist or social worker, but from the perspective of a person who has it. The voices of the autism community should be as diverse as the community itself. I don’t pretend to be an expert but you can’t really understand autism unless you actually have it.

I often hear people asking why I am not like their son. Autism is a spectrum disorder. I am as different from Temple Grandin as she is from Vernon L. Smith who won the Nobel Prize for economics. For starters, I haven’t written any books like Grandin and I am not all that great with math like Smith, but I am comfortable with it. Many autistics are non-verbal. Others simply don’t know when to stop talking. Many are also blind. While others have synesthesia, which in some cases causes people to see letter and numbers as colors.

I should make it clear that I do not have synesthesia.

Not all autistics are men. Many are women. In fact, more and more women are being diagnosed with autism than ever before. Also, not all of us were diagnosed as children. I know a few who were diagnosed as adults. I was diagnosed as a teenager. I was diagnosed with Asperger’s syndrome, a form of autism.

Aspies, as some of us like to refer to ourselves, often have difficulty interpreting social interactions. The degree to which this occurs varies from Aspie to Aspie. I remember, several years ago an Aspie friend, who shall remain nameless, came to visit me and my family after we had all gone out. He continued talking to us and sitting in the living room despite some of my families intimating that they were tired and going to bed. He even continued chatting with us from the living room after we had all gone to change to our pajamas. It was not until my mom told him we were going to bed and he needed to leave did he get the clue and leave.

I on the other hand am usually the first one to want to leave a friend’s house when it gets late.

Aspies can be clueless when it comes to social interactions, but we are also refreshingly honest. It’s not in our nature to act with guile or deception.

Remembering Our Dead: Autism in Memorium 2011

 

The number of people who have autism who were killed this year should be zero. The fact that so many people with autism are killed like this is one of the reason’s why I write this blog.

Remembering Our Dead: Autism in Memorium 2011 | thAutcast.com.

Why I Write This Blog

When I first started writing this blog I wanted it to be a place to showcase my skills as a writer. I have written a lot over the course of my life from works of fiction like Ivory Requiem or poems like Be The Change the words of which have become the basic mantra of my life.

The change is you
Live it like it was tomorrow today and yesterday
Society drags down those who don’t resist
Resist the mediocrity and the hypocrisy
The change is within you
And lives through you
It shields the downtrodden from the fists of society
And builds up the weak to highest points
Be the change
And it will change you
Never look back
Keep your eyes on the future
Like the light that it is
It will guide you to the change you can be
Be the change and it will change you
The future seems bright if you live it
The future will be the change
And the change will be you

Still, as time grew, it became just a place where I should showcase myself. Where I could be honest and candid about life. Yet people have been cautioning me that it I should be mindful of what I post online because people might get the wrong. That is exactly why I write this blog so that people won’t get the wrong impression about me as a person. I may have autism but I am still a person. I feel pain, I laugh. I smile. I cry. I am human. Yet I know that people have misgivings about meeting or working with or being friends with a person that has autism. Out of lack of knowledge they can’t get past the “that has autism” part and often forget the “person” bit. That is what this blog has been about: dispelling that ignorance that still exists.

In my last post Why I Use Social Media, I described my need to express myself and connect with other people and how if I wasn’t on sites like Facebook and Twitter. people would not know anything about me. The same is true for this blog. Yet it is here for more than that. I realized over time that there was a lot of ignorance about autism still in the world. It exists despite all of the bloggers and vloggers who try to spread awareness of the disorder.

Ignorance is perhaps the most infuriating thing anyone has to deal with. It is like a disease that just doesn’t want to leave. I see a lot of ignorance everywhere. I sometimes feel that despite the number of people blogging or vlogging about Asperger’s that we are really just preaching to the choir. Either that or we are shouting really loudly and no one is listening. I am not certain which is more frustrating.

On the other hand the battle for awareness of autism has made great inroads among neurotypical people. There are now two types of neurotypical people I have met. Those who know people who know people with Autism and people who don’t. This blog is primarily for the people who don’t but sometimes it applies to the people who do. Ignorance and prejudice can be a fickle things many people may not be aware they even are prejudiced or ignorant. Others are more blatant about it. Even the nicest and most caring of people can be ignorant at times. Even people who know people who have autism can be ignorant. Even people who have autism can be ignorant. The worst is when people don’t realize that they are ignorant. It is for them that this blog is written to end their blindness. I write it to illuminate what they are not seeing that disability does not mean inability. If that were true, I would not be working where I do.

Also there are the people who want to learn more about the disorder that some call autism and I just call being human. For those people too, I write this blog so that they can learn more about it. I have many neurotypical friends who I want to teach more about autism, its causes and its effects on people lives because only through knowledge can ignorance and fear be brought to an end. And on that day I will stop writing this blog because there will no longer be the need. Until that time, I shall continue writing even if I am old and grey. I will not be silenced by ignorance and fear.

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Why I Use Social Media

People have been commenting about why I use social media as much as I do. Its simple really. The answer is in the name: social media. People use it for various reasons but the primary reason most users use sites like Twitter and Facebook are the social interaction features. Yet for many people with autism the primary reason is communication. It is where we converse with friends and family much like a non-autistic person picks up the telephone to chat with a friend. So much of the conversation surrounding social media is about its uses for journalism, pr, marketing and activism. Yet while those people are the most numerous of users they are not the most active. While they tend to use it doing the work time hours of 9 to 5 or even a few hours after work until they go to sleep at night, we never stop. M0st people with autism don’t have regular sleep patterns.

Autistics are usually fairly limited in their ability to interact with people in a social manner. I myself don’t have many real friends except for maybe one or two. Sure I have met a lot of nice people but that barrier that is called autism exists. Social media is how I cross that barrier. It is my portal to the world. It is where I become known to the world. It is where I interact and socialize with people and learn about the world. How many people would I have met without this online medium? Probably none. It was through Twitter that I met Stacey Soleil who is such a caring and true friend even though I haven’t spoken to her recently yet I still enjoy seeing her snarky poss on my Twitter feed. Also there is my friend Cristina Dunning who is like everyone’s personal cheerleader always trying to encourage people and cheer them up and just generally make them laugh They are just some of the awesome and amazing people I have met.

I am not the most chatty person. In most social situations I am usually the one who is sitting quietly like a wallflower but I don’t mind doing that. It gives me a good chance to observe human behavior. I am quicker to size up a person and estimate what they are about because while everyone is chatting with other people, I am observing them. I learn a lot about human behavior that way. Yet at the same time the barrier exists that keeps me from interacting and socializing with other people. I am much more comfortable with interpersonal communication as opposed to group communication. I often sit and watch as people start-up conversations with other people and just gab away while I am often sitting quietly.

Sociologists who study group behavior say that it is possible to feel lonely and isolated in groups. Our dependence on technology as a society has created a state where we all have become like islands in a vast ocean instead of countries who share common borders. Loneliness and isolation is common for people with Asperger’s is common without the use of technology. Without the use of social media Aspies like myself as well as many other autistics who are non-verbal but can type like Carly Fleischmann who has a website called Carly’s Voice and blogs about autism for CTV. Social media is the window to the world for many people who have autism.

If I did not post on here even the people who see me on a regular basis would not know anything about me. I would just be that strange guy who sits in a corner and sometimes says things that are a little weird or out-of-place. People need to understand that this is where I communicate. Like some people like to gab about their lives to their friends at parties or at work or on the phone or in various other social situations, this is where I gab about my life to mine. People tell me that I should be careful about what I post online but when they say that it is clear they don’t understand autism and some leeway is needed when making such demands. That is why I have written this. Just so people can understand the way that I communicate is different from most people. I am not saying either way is wrong of right but the world in general favors interpersonal communication over online communication because it lacks a personal touch and people are always worried about how people might react to something so they keep it offline, for me offline means in my head or in a private journal and not with a close group of friends like many non-autistics choose to do.

For me social media is my way of gabbing about my everyday life. It is the doorway into who I am. It is here that I share my stories instead of gossiping about it with people offline in social situations. If I didn’t do this no one would know anything about me not even the people who see me on a regular basis. This breaks down the barrier that autism creates. I don’t ask why people talk to each other in person or on the phone, because I spend so much time online for the same reason: to communicate and interact with people. I hope this helps people understand me better because though I am verbal I am still in many ways locked behind the walls of autism.

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Michael Raven: A Tragic Loss

Michael Raven, 12, ‘bullied by girl gang for being autistic’ found hanged | Mail Online.

I wrote about my own experiences being bullied in recently in a post and upon seeing this article it immediately drew me back to it having been no stranger to  bullying as a child. I can only imagine the taunting and bullying that Michael experienced that drove him to kill himself. I wonder if the girls responsible feel any remorse? I have to ask this again but when will the abuse stop? When will the ignorance end? When will autistics be fully accepted into society? Those are questions that I  can’t answer, but hopefully someone can soon. No child should be made to feel ashamed or embarrassed because they are different. No child should feel that their only escape is to hang themselves. That is unacceptable.

Stimming

For the non-autistic person this term may be unknown. Stimming is short for Self-Stiimulating Behavior. The primary reason an autistic stims is to cope with the environnment in which they live, much like a neurotypical person uses a stress ball to cope with stress. It produces the same effect as the stress ball because for some reason the movement of the body and the stimulation of the nerves distracts the brain from the dealing with emotions such as anxiety or joy or even sadness.

I made this video to show how I stim.

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