Category: Autism

Not Wanting to Pass for Neurotypical.

I was reading a comment on a Facebook group where a mom was asking how to tell her Autistic daughter that no one was coming to her birthday party. She had invited 30 people to her daughter’s party and didn’t know how to tell her. Seeing that bothered me and reminded me of many of my own birthdays a child and as a teenager.

Autistics are highly intelligent but socially awkward in most cases and sometimes we do things that make other people uncomfortable or give us strange looks. And that leads to social isolation and depression. Autistics have a high rate of depression because of this isolation. We are not always isolated because we want to be, but because we don’t read social cues and often are faced with an lack of understanding from neurotypical people who, because they don’t understand us, often exclude us from social activities. Human nature is to discriminate and segregate that which we don’t understand.

In order to survive in this world we Autistics are expected to pass for neurotypical. In other words, hide who we are. We have to learn proper behavior in classes or in groups or in one-on-one sessions with behaviorists.  Autistics like me take behavior classes to learn acceptable behavior when neurotypicals aren’t taking classes in tolerance. We basically have to learn to behave and think like a neurotypical person. That is not always easy for us, but it is not impossible. It takes a lot of energy to behave like an NT person. We can be charming and friendly, but it takes effort on our part.

Unfortunately this places an undue burden on us and it’s not something I am willing to do.

Behaving like a neurotypical person also means needing to learn how to think as a team at times. The idea of thinking as part of a team is foreign to us, but it is not impossible for us to learn. It just takes time and a bit of creative thinking and a bit of patience from neurotypicals. Still, understanding the deficits Autistics have in this area can go a long way to making the process easier. When there is no understanding it can be frustrating for us. I for one don’t always understand when people don’t know much of anything about autism. I suppose this is similar to what happens to neurotypical people who don’t know anything about autism meet an autistic person for the first time.  I can imagine how frustrating it can be when we don’t respond to something they have said because we are so fixated on something. That level of concentration can be a real boon especially because it allows us to pay attention to minute details especially when doing the research. I can also understand when say exactly what we are thinking how it can make neurotypicals uncomfortable. Autistics are notorious for their lack of guile especially when it comes to their thoughts and feelings. Neurotypicals seem to very good at not letting their thoughts be known especially when they know that by saying what they are thinking could prove disastrous.

That singular fixation we Autistics have can be the cause of our social isolation. I believe that its important to look up from what you are doing every once in a while and say hello to the people around you. That way people will at least know that I am making an effort to be social. Life is only enriched through the connections we make with other people. Making friends takes effort even for neurotypical people, but it takes an even greater effort for me. I know that in my case I have to make a conscious effort to be social with people and learn the rules of the social road.

I often forget that much of the strife Autistics experience in life is caused by the fact that we expect neurotypicals to understand us and force us to act more like them. I, for one don’t believe that most of the neurotypicals I have met are inherently mean or intolerant. I think autistics don’t understand the world of the neurotypicals as much as neurotypicals don’t understand our world. This lack of understanding on our part leads to us feeling that the neurotypical world is inherently unjust when in reality we just don’t think in terms of greys like they do. The expectation that all people will react the same way is an unrealistic expectation that develops as a result.

I think autistics have to spend lots of time being forced to be things that they are not. We should be allowed to be ourselves but often we are not.

Autistics have difficulty understanding abstract thought. I for one am no exception.  Living life is an abstract thought. There is a lot of unknown in the world and I am not afraid to try and understand the abstract world I live in with my objective and factual mind. Yet, as a person with autism, I see and experience too much ignorance. It frustrates me. I wonder when it is going to end. Then I realize its not when it will end that matters but how it ends. The manner in which you face injustice is the manner in which it ends. If you handle it with dignity and grace it will end quietly. The way to make people accept you is to be yourself and to accept them in return.

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If I had a son….

If I had a son, he would most likely have Asperger’s Syndrome like me. This is what I would tell him when he asks how to live in a non-autistic world:

“Living with Asperger’s Syndrome is difficult. It can be frustrating not knowing if people like you because they use body language to convey their thoughts instead of just saying what they feel. This also makes it worse when people lie. It comes easily to non-autistics to lie and cheat and take advantage of autistics and non-autistics alike. Most people who are not autistic are cowards. They chastise and mock anyone who dares to be different. It is hard for them to accept you because they can’t accept themselves. The ones that do dare to be your friends are special because they are brave. They are brave enough to be different. They are brave enough to accept your differences despite what people will say. I say to you ignore the nay sayers and the doubters. You are capable of achieving your goals. It may take you longer but you will get there. Why rush? Life is wonderful. Enjoy it. Let people hate you. They are just jealous of what you can do. They are just jealous of the way you look at the world. If people think you are incapable of being useful and productive. Don’t let them deter you. People with Asperger’s have to adjust to a world that refuses to adjust to you. It is how you deal with this selfish injustice that defines who you are. I would rather have Asperger’s than not have it. Be proud of who you are.”

I just wish my parents had said this to me.

Autism Reporting: Know the basic facts.

Autism reporting: Know the basic facts

By Robert Moran

In December 2012, a young man walked into Sandy Hook Elementary School in Newtown, Conn., and killed 26 people, 20 of them children. We later learned that he’d killed his mother before going to the school.

His many issues relating to social isolation came out in the following months, including the fact that he had Asperger’s syndrome, which is an autism spectrum disorder.

As an autistic person, those subsequent headlines startled me, and not just because innocent people were killed. I talked to some people online after the shooting, and this was the first time some of them had ever heard of Asperger’s syndrome. They first heard about it as a result of a mass shooting at an elementary school.

To read more click here:  http://www.spj.org/quill_issue.asp?ref=2110

In Memoriam: A Eulogy for My Mom

My mom died March 1. I gave the eulogy at her memorial.

When I was first asked to write this I found myself asking how do you write a eulogy for your mother? How do you say goodbye? The answer is you don’t. You say I’ll see you later.
Still I found myself at a loss as to where to begin so I decided to do what any good journalist would do and start with the facts.
My mom was born Deborah Elizabeth Stortz on (date of birth) in (place of birth) and Died as Jennifer Deborah Elizabeth Stortz Andres on March 1 at her home in Arizona.
My mom loved to go camping and fishing, traveling. Some of my fondest memories where of the trips my mom and my sister and I would take to Calico, camping in the mountains and skiing at Lake Isabella.
That skiing trip I still remember clearly. I must have been about 6 years old and my sister tricked me into wearing these heavy ski boots. They must have been made it to of lead. I mean seriously I mean seriously these boots were the kinds of that mafiosos made their enemies wear when they were about to dump them in the Hudson River.
I walked out into the snow and down I went. I literally could not get up the boots were so heavy. I lay there screaming and crying for what seemed like hours but when you are young everything seems larger than it is so it may have just been hours. I remember this story because it was my mom who came to rescue me from the snow. She took me back to the ski lodge and gave me a cup of warm cocoa, some slippers, and made sure I got warmed up. See that’s just who my mom was. She loved her family and most especially you and me Michelle (my sister). All we needed to do was just ask and she would be there for us.
My mom loved giving and gave us lots of love. She also gave us material items. She gave us our first color television. Do you remember that Michelle? I only think of that because it took her dying for me to realize the impact that she had on my life. If she had not given us that TV I would never have been introduced to TV news.
It’s funny how much our lives are interconnected. When she was a child she once met Walt Disney and because of her gift I now work for his company.
I am a firm believer in God and I know that my mom is in Heaven. And when it’s my turn to die I know that she will be waiting in front of the pearly white gates with a big smile and open arms. So I love you mom, but as I said earlier this is not goodbye this is I will see you later.

The Weird that is Me.

I am constantly aware of autism. I am autistic. It is a part of me but it is not all of me. I am cognizant of how different I am from the time I get up in the morning to the time that I go to bed. I know I am weird and I like it. I am not ashamed of who or what I am. In fact I am proud of what I have accomplished in this life. Autism Awareness month is of great importance to me not because of all the Autism walks but for the fact that many of us become more vocal and share more of ourselves and are noticed more.

If we don’t share what it’s like to be human for each of us, how are we to know, understand and accept each other, as well as ourselves? So much of what makes us human is our desire to connect with other people. Autistics are no different in that sense. We all want to connect with others. To varying degrees we try connect with each other. If we cannot speak we find other ways to communicate whether it is through sign language or music or art. All things we do communicate or express an idea or an emotion. We just have to listen to understand what is being conveyed. In it’s most basic form autism is a disorder that alters the way that we communicate. Some of us like Carly Fleischman use writing. Fleischman writes the blog Carlys Voice and was featured on 20/20 several years ago. Others communicate through body language and facial expression. All humans communicate and I am human.

I know that I am weird. I don’t always say hello when I should. I often will get so focused on what I am doing that that I may forget there is anyone else in the room. Yet, I take great pains to remember the little things in life because details matter. And those details often include things that most people don’t realize like making eye contact. For the longest time I did not make contact. It took several years for me to learn how important it was to do it. If I didn’t make eye contact with people they thought I was insecure. I was neither. Eye contact and handshakes are things that most people take for granted but for a person with Asperger’s just being able to make eye contact it is a pretty big deal. Through years of training and mimicking the actions of reporters from both KABC the Los Angeles affiliate and from ABC News I learned to mimic the proper motion of a handshake.

Living with Asperger’s Syndrome is difficult. It can be frustrating not knowing if people like you because they use body language to convey their thoughts instead of just saying what they feel. dare to be your friends are special because they are brave. They are brave enough to be different. They are brave enough to accept our differences despite what people will say.  People with Asperger’s have to adjust to a world that refuses to adjust to us. It is how we deal with this selfish injustice that defines who we are. I would rather have Asperger’s than not have it.

It has not been an easy to deal with  being autistic, but I never let it stop me even when was told I would never amount to much. I guess I proved the nay-sayers wrong.

I never let being diagnosed with keratoconus a degenerative eye disease in both eyes when I was 15 stop me either.  I never learned to drive as a result and rode the bus most places, which is no small feat in Southern California. It made things more difficult especially when I was attending school and reporting for the campus TV station because I would have to carry my camera, and other associated equipment such as tripods and occasionally boom mics with me on the bus. Often the trip would involve changing buses two or three times each way and would take up to 2 or 3 hours each way per trip.

Despite all of the things that I have accomplished I still know that I am weird. One of my biggest eccentricities is that I am always wearing a hat except for when I am at church or when I go to sleep at night. It is my uniform. Like Temple Grandin who always wears western wear like a cowgirl, I always wear a hat. It gives me a sense of comfort and stability to wear it.

I know that I am weird because I stim. Stim is short for self-stimulation. Many autistics I know do it. It is pretty much how we deal with emotions. Most people including those that are not autistic stim in some form or another. When people are nervous or anxious some people tap their pencil and sometimes women play with their hair. What we do is not much different except we do it differently. When I am excited I rub my eyes. When I am nervous I rub my hair. The sensation we feel temporarily distracts us from the emotions we are feeling. Autistics often feel those emotions in a manner that is much stronger than a person who does not have autism. That is because we lack the ability, or in many cases it is just severely impaired, to censor ourselves. This often has an impact on our relationships. So much of our interaction depends on the little white lies we tell each other so that we won’t hurt each other’s feelings. Normally it is done as an act of sympathy, but to some autistics it is just logical to tell the truth.  That does not mean that autistics are incapable of feeling sympathy or empathy.. We do. We are not robots. We feel as much if not more than other people. Some of us even understand sarcasm.

That being said, I am still weird. Autistic humor often takes some thought and might not make sense to most people. Autistics do have humor. Even Data, the android character from Star Trek: The Next Generation told a few jokes. Like Data I often don’t understand why they are funny. I just know that they are funny.

I am weird because no two autistics are alike. I am human. Humans were not built in factories to exact specifications so that we are all carbon copies of each other. Honestly that would boring if we all looked alike. Many of us are non-verbal. Some of us are. I can’t do math like Jerry Newport, the basis of the movie of Mozart and the Whale, or Vernon L. Smith who won the Nobel Prize for Economics in 2002. I cannot write music like Travis Meeks, the lead singer and songwriter for the Band Days of the New. I can only write. I wrote my first short story when I was 9-years-old. In fact, it was my writing skills that led to my career in journalism.

I am weird because I look at the world through a different lens than most people. I am weird because I often say the wrong things and always dress the same way and do almost everything in the same way. I am weird because I like routines. They give me a sense of order and structure. I am weird because I am different. I am weird and that is fine with me.

Autism in the Media: Asperger’s Syndrome, Adam Lanza and the (Dis)association with Violence

Part one of a series looking at the ways the media represents autistic people.
Continue reading “Autism in the Media: Asperger’s Syndrome, Adam Lanza and the (Dis)association with Violence”

Meeting Myself for the First Time

Today I went to my first meetup for autistic people. It was both eye opening and interesting, I honestly had never spent much time with other autistic people. In fact I have never met any other autistic people in real life before. All of my friends and coworkers are neurotypical. So it was like meeting me for the first time. The last time I had ever spent any time with an autistic person was when I met Temple Grandin at an autism conference at UCLA 20 years-ago. Yes that Temple Grandin and yes 20 YEARS AGO.

The group was fairly diverse in ethnicity and age. As I looked around the room I saw myself being reflected back at me. That was not something I could ever experience with my neurotypical friends and coworkers. I sometimes felt that they did not understand me. That was probably because they are not like me at all and could not identify with me. Humans tend to socialize in groups with people that are like them. We call those similarities culture, religion and so on so forth. I guess there is some sort of autistic culture with its own body language and behaviors and the manner in which we perceive the world. I never noticed that until tonight. When I walked into the room I knew that I was in a room full of autistic people just like when I know when I am in a room full of neurotypical people. There was no criticism just acceptance and the freedom to be who we were without the need to conform to neurotypical norms. It was perfectly appropriate for one attendee to wear headphones to protect himself from noises. Some autistics are sensitive to noise. There was no pressure to act normal we could just be ourselves.

When I am with neurotypicals there is this pressure to conform to societal standards and to peer pressure which was the topic of discussion for tonight. When asked if anyone had an experience as to whether or not a neurotypical person had all pressured us into doing something we didn’t want to do, or try and take advantage of us or bully us, we all had a story to tell. It reminded that we all have had to struggle as a result of our autism. That commonality binds all autistics together in a way that I can’t with my neurotypical friends and coworkers. I think it is because no matter how well-meaning they are they don’t realize that they are part of the problem. They don’t understand us and we know and they don’t always know that we know it.

I believe that neurotypical people should take classes in how to behave like an autistic person and then act like one of us for a day and see what people say to them or how they are treated.

Either way being able to spend time with a group of people with whom I could identify with in manner. With this group it was perfectly acceptable to be socially awkard and miss social cues and not make eye contact with each other if we didn’t feel comfortable doing so. In fact, it seems we were expected to be that way, It was both freeing and fulfilling. It was a type of freedom that neurotypical people could not comprehend. I was free. I was just me.

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.

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