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.

Remiss…

It seems I have been remiss in posting in my blog. Life has taken a very drastic turn in the last few months and my time has been filled with having to do the ordinary things of life that we must all deal with. Lots of changes and life lessons and other such things.

The Secret of The Lie: Chapter One

Here is the first chapter of the novel I am writing.

When I saw Ana Lucia Arismendi Obregon it was like time had stopped. She was sitting at a table at the back of the room. Her dark hair flowed over her shoulders and down into the middle of her back. She was no longer the awkward teenager that I remembered that loved gelados and having fun in the park. Her dress was stylish, grey with spaghetti straps. Suede boots covered her feet like slippers. Upon seeing her I almost did not notice that the bodega was almost empty. Only an older couple sat at a table eating enchiladas near the middle of the restaurant. The only light was from the windows that lined all four walls. The sunlight filled the room with a heavenly glow and illuminated Ana Lucia’s hair causing it to glow.
Her back was to the wall and she was sipping a glass of water. She set it down and it was then that she saw me. Her dark brown eyes locked on mine and in them I could see a mix of surprise and recognition. There was the slightest hint of redness in her cheeks and she looked away embarrassed. I made my through the tables and approached her table.
I stood at the edge of the table and smiled at her.
She did not look up at first but when she did it was as if she did not know me.
“I am sorry, sir you must have the wrong table,” she said.
“It is me! It is Jack.” I said smiling even wider.
My smile seemed to make her uncomfortable. She glanced at me and then back at her glass of water.
She continued to avoid my gaze. “No. I don’t remember you.” She said softly.
It had been ten years since I last saw her. She was just a 15 year old girl at the time I left. Now she was older in her mid twenties. My memories of her were fond ones. They were the only bright spot in a dark time. I remember how we used to play in her grandmother’s garden with my dog and would go and get ice cream in the afternoons and just laugh at my jokes and just chat about anything. Other than my friend Jaime, Ana Lucia had been my only friend when I was younger. Being the only gringos in the small town of Guadalupe in Sonora life was difficult, but also being misunderstood made life difficult. I was always a kid that preferred to spend time by myself. Making friends had been difficult for me. I wasn’t shy. It wasn’t until I left Guadalupe and went to live in Los Angeles with my grandfather that I was diagnosed with Asperger’s Syndrome.
Ana Lucia could not have possibly known that when we were younger, but I don’t think that to her it would have mattered. She had been a true friend. An angel that lived in a house of snakes. Now here she was ten years later, pretending not to know me.
I knew she was lying and I told her so.
“I know you remember me, Ana Lucia,” I said. “You recognized me from the first moment you saw me.”
I sat down at the table. Ana Lucia did not try and stop me.
She looked up at me, her eyes pleading with me to forgive her. There were tears in her eyes.
It was such a wonderful feeling to see her again. So many things had changed since I last saw her. I wanted to tell her everything that had happened to me, but I didn’t. I just smiled at her.
There was a small vase of flowers in the center of the table. The vase was full of lavender like the ones she gave me once when we were younger.
“I have never forgotten you.” I said I plucking some of the flowers up with my left hand and handing them to her.
Tears welled in her eyes as she accepted the flowers, but as she did she stopped and glanced at my hand. I knew she was looking at the wedding ring on my ring finger. She looked up at me with what I thought was surprise, but it could have just as easily have been something else that I did not recognize. That look she gave me concerned me.
I knew I should have taken the ring off, but the scars of my wife’s death two years before were still fresh.
I wanted to tell her everything but I wasn’t here for a social visit.
I was back in Guadalupe to find out who killed my mother.
Ten years had passed since her death and the memories of those events had haunted me since the night she died. My memories of the events leading up to her death were still clear in my mind.
My father died when I was young. At least that is what my mother told me at first.
Seeing Ana Lucia, filled my heart with joy.
“Why are you lying to me?” I asked her again.
She opened her mouth to speak, but was interrupted by a man’s voice.
Ana Lucia quickly hid the flowers I had given her in her purse.
I looked up and a young man in his late twenties, with short brown hair a mustache sat down at the table.
“Hello my dear.” He said to Ana Lucia as he leaned over and kissed her. I recognized him. He was Raul Pedregon the son of Juan Pedregon the president of the local Association of Farmers whom my grandfather and I had met with earlier that day. It was Juan who had suggested I have this lunch with his son. Juan probably wanted Raul and me to be friends in the hopes of gaining my grandfather’s good graces when it came time to do business.
Raul sat down and gave Ana Lucia a peck on the lips. She did not look happy about it.
“Hello Jack,I see you two have already met. Ana Lucia,” he said grabbing her chin and tugging on it affectionately, “is my girlfriend.”
Ana Lucia looked positively annoyed his gesture.
“Jack is the son of Raymond Dempsey.” Raul told Ana Lucia. “They came here to invest money and build a packing plant.”
“Yes,” she responded. “You already told me that.”
Raul turned back to me. “Well it is a good thing that you came to this state. If you had decided to go somewhere else we would have been screwed.”
I smiled at him reassuringly. He had no idea how long the plan to come back here had been in the works. Raul was already giving me the impression that he was a lazy ignoramus. The more he spoke the more I was sure of this. I was here not just to invest money. That was a pretext. I wanted to know who killed my mother.
“Oh don’t worry,” I said smiling wryly. “The decision to come here was made here some time ago.”
Ana Lucia gave me a look that was mixture of surprise and anger. The glimmer of anger was something that bothered me.
“Have you ordered yet?” Raul asked.
I said no.
Raul called for the waiter. “Waiter!” he shouted.
A waiter approached the table. “Would you like something to drink?”
Raul smiled and said looking at me, “Would you like some tequila?”
I shook my head no. “ Tequila? No Thank you?”
Raul seemed offended by my response. “Well then what do you want, wine?” he asked almost spitting out wine.
I turned to Ana Lucia “What do you prefer wine or tequila?”
She looked uncomfortable as if she was still uncertain as to what to say to me. “Wine.” she said tepidly.
The waiter handed Raul the wine list. Raul handed them to me “I will let you look at it because I don’t know much.”
Of that I was sure.
I took the wine list from him and glanced at it briefly. “What do you prefer to red or white wine?” I asked Ana Lucia.
Ana Lucia’s gaze returned to what it had been initially and had been throughout the entire conversation a look of happiness mixed with shock and surprise and uncertainty.
She responded uncomfortably,, “I don’t care.”Her response was not flippant as it was more uncertain than anything else.
Raul turned to her “He asked what you wanted.” he said with a slightly condescending tone. “Tell him what you want. You look like a rancher’s daughter without social graces.”
Ana Lucia turned her head quickly in his direction. Her dark hair whirling about slightly. I saw a glimpse of fire in her eyes. “Look, I am not a rancher’s daughter without social graces. You know perfectly well that I don’t like to drink.”
Raul seemed to back off his comment for a second. He shook his head and smiled at me. “She has character. And it is for that that I like her so much.” he said glancing at her. “Look I was just joking Ana Lucia. Get what you want.”
Ana Lucia was still visibly upset. “I don’t like jokes like the ones your father makes.”
Wisely I interrupted their conversation. “Let’s just get some wine.”
I handed the wine list back to the waiter. “Just give us whatever red wine you from Baja California.”
The waiter nodded and left.

The sun was hot on my face as we walked outside after we had finished the meal. Raul had his arm around Ana Lucia who by now seemed much more comfortable. Raul let go of the Ana Lucia
“Hey,” Raul said to me. “How about we go to the club tonight?”
I shook my head. “No I have some business to attend to tomorrow and need to go to bed early tonight.”
Raul pressed the matter.”I could introduce you to some women.”
Again I shook my head and said no.
Raul peered at me for a second. “Why do you have a girlfriend?”
Ana Lucia looked at me. Her eyes filled with interest.
“No,” I said. “I don’t have a girlfriend.”
Ana Lucia looked away for a second then returned her gaze back to me and my left hand. Raul followed her gaze and looking at my hand. “Or is it that you married? You know how wives can be. You tell them you are going somewhere especially to a foreign country and they get jealous. You step out once and they make your life hell.”
I hesitated before answering. I really did not want to answer with Ana Lucia watching but this idiot decided to press the matter. How to answer that question?
“I don’t think my wife would be jealous. She’s dead. I am only recently widowed.” I said.
The look Ana Lucia was similar to the one that she had given me earlier that I had not liked earlier. Only this time it was more intense.
Raul seemed oblivious to this. “Hey give me your valet tickets.” He said to us.
We both complied and he went to give our tickets to the valet.
Ana Lucia looked at me again. “You were married?”
“Yes. I was, but she died last year” I wanted to change the subject as quickly as possible. “How is your family?”
Ana Lucia sighed. “They are well.” she said. “My sister just got married.”
I was surprised by this news since Ana Lucia’s sister Carolina had always said when we were younger that she would rather bathe in acid than get married. I guess time changes people. Proof of this was Ana Lucia. She was no longer the teenager I remembered. She had become a beautiful and intelligent woman. It surprised me to that I thought she was perhaps the most beautiful woman I had seen in my life.
“You know,” I said. “I never thought you would end up with an idiot like Raul.”
She looked away. “Our families wanted it.”
It was clear that she did not.
Raul returned with our keys. He and Ana Lucia said her goodbyes. I stayed for a watching them leave. I knew that some how some way, I was going to see Ana Lucia again. Fate had a strange way of making things like that happen, but now I needed to attend to the business I had spoken to Raul about. I needed to see my friend Jaime, but first I needed to visit my mother’s grave. It was time to see her grave. I grasped my car keys and walked into the sunlight towards the curb where the valet had left my car waiting for me.

Characterization in my novel

I am currently writing a novel. Every writer has their own method for writing a novel. This is mine. For me creating character names is as important a part of the story as the plot itself. The way I write my stories is by choosing my character’s names first. Then I create their personalities around their names. Finally I create the story around their personalities. The principal characters and their actions and personalities cause the reactions of the other characters and their eventual actions and thus the story itself.

For the principal characters I chose the names of Ana Lucia Arismendi Obregon and Jack Dempsey. Notice that Ana Lucia has two last names and two first names? The explanation is simple since names like Ana and Maria and Lucia are common names often names are combined in Hispanic culture so that there can be some differences in the names. Also she has two last names Arismendi and Obregon. Both her parents have two last names as well. Ana Lucia has the first last name of her father and mother . Her father was born Jose Arismendi Curiel and her mother Lucrecia Obregon Mendoza. So Ana Lucia has the last name of Arismendi Obregon. Since my novel takes place in Mexico I thought it best to follow the cultural naming practices. As it is the culture of Mexico is very different from the US and the culture will have a huge impact on the events in my novel and their actions. Ana Lucia is beautiful and sensible and intelligent and patient caring and very independent. She is fiercely loyal to her family even when her mother and sister treat her horribly which the usually the case. I tried to illustrate these aspects of her personality by choosing the name of Ana Lucia, who along with Jack is central of the story. Jack Dempsey is also very independent and is one who fights for what he believes and for those he loves, but he has spent most of his life alone since he has never met his father and his mother was murdered when he was a teenager. His name was an homage to the Irish American boxer of the same name and I wanted to symbolize Jack’s fighting spirit. After his wife died he believes that he is incapable of loving again, but her dying wish is that he return to the town in Sonora where he grew up and release the demons that have plagued him since his mother was murdered. Jack will have to pay a high price of his quest for vengeance as all actions and decisions we make in life have their consequences. The story is set in the fictional town of Ascuncion. Amongst the backdrop of ranches and cowboys and saguaro cactus is a web of tradition and betrayal, greed, corruption, family and honor. I hope you enjoy the first chapter when you read it.

A Failure to Communicate Part 2: Autism and Relationships

Having Asperger’s makes life difficult. It makes for frustration due to an inability to properly communicate your emotions which can cause problems in your relationships with other people. This is a common problem for many people with Asperger’s. If you can’t communicate your feelings how can you develop relationships with other people?

It may be difficult but finding ways to communicate are not impossible. Communication is not always direct. It can often times be sideways and ambiguous.  Miscommunication can be a problem in any relationship but with Asperger’s avoiding miscommunication can be especially tricky.

Adrienne Warber writes in her article Asperger Relationships:

 A person with Aspergers and his loved ones may find themselves in conflicts that have root in key aspects of the condition. The conflicts are often misunderstandings that stem from differences in emotional responses, communication and social skills problems, routines and obsessive behaviors. The person without Aspergers orneurotypical and the person with Aspergers may have different sets of expectations and ways of relating in a relationship. Learning about Asperger characteristics can help family members and friends better understand their loved one.

While the article is talking about romantic relationships the principle can be applied to any relationship because all relationships rely on communication skills.

As I stated in my previous blog, people with Asperger’s Syndrome struggle from mind blindness. Meaning they have difficulty interpreting people’s behaviors, emotions and body language. This can lead to the person with Asperger’s to misinterpret the other person’s response as being negative or inappropriate. Also the person with Asperger’s, because he or she has has misunderstood the other person’s motivations, may react in a way that is inappropriate or negative.

The way to solve this issue and for the social relationship be it friendly, coworking, amorous or otherwise is for all parties involved to have a clear understanding of the disorder and of the person who has it. Autism is a spectrum disorder so we all exhibit it in different ways and it is important to understand not only what the disorder is, but how it affects us on an individual basis.  According to Adrienne Warber, everyone should work together to solve communications problems that may affect any relationships.  She is right. Relationships take work to succeed, but when one of the people has autism, it may seem that only the neurotypical person is doing all the work and the person with Asperger’s may not feel anything which is simply not true. People with Asperger’s can have difficulties expressing what they are feeling or what they need.  Understanding this can help any relationship.

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Largest Database on Autism Research

This is great news. I saw this on Natascha Santos blog and just thought I would share it.

According to Santos,

the National Institutes of Health announced that the National Database for Autism Research (NDAR) will partner with the Autism Genetic Resource Exchange (AGRE) to create the largest database to date of genetic, phenotypic, clinical, and medical imaging data related to research on autism spectrum disorders (ASD).

 

This announcement is pretty huge.

via Largest Database on Autism Research.

A Failure to Communicate Part 1: Empathy and Autism

One of the most difficult things about having Asperger’s is being mind blind. Mind blind refers to the inability or in some cases difficulty to interpret other people’s body language, vocal tones, demeanor, facial expressions and body language in general. Mind blindness can lead to all sorts of issues when interacting with others and can lead to frustration among people who have autism because they feel they are being misunderstood by other people when often it is they who are not understanding other people. Autism at its core is a communication and behavioral disorder in that it affects the way we communicate with others and our behaviors especially while trying to communicate with others.

For people, not familiar with autism, mind blindness can make people with autism seem like their behavior is inappropriate. I do not mean sexually inappropriate.  What I mean by inappropriate is behavior that is often considered outside the norm like incessant talking, or the development of intense feelings in social relationships caused by a difficulty to understand the differences between relationships such as friend, coworker and acquaintance.

Also mind blindness can impact the social relationships of a person with autism.  Tom Berney, in “Asperger’s Syndrome from Childhood to Adulthood” describes our social relationships as such:

These are one-sided, distant or even absent, rather than really reciprocal. Behind this is an unempathic objectivity that results in difficulties that range from understanding friendship (and how friends differ from acquaintances) through to making sexual relationships and grasping the rules that distinguish, for example, seduction from date rape. The person is not uninterested in relationships but, misunderstanding them, is too intense or too detached.

This misunderstanding on the part of the autistic is not intentional but can be avoided. Still, it is necessary to understand the roots of such behaviors. Simon Baron-Cohen wrote a paper in 2001 called “The Theory of Mind.” He writes:

By theory of mind we mean being able to infer the full range of mental
states (beliefs, desires, intentions, imagination, emotions, etc.) that cause action. In brief,
having a theory of mind is to be able to reflect on the contents of one’s own and other’s
minds.

Minds in this case can be defined as other people’s feelings, body language etc.

I know that other people have thoughts and feelings, but the nature of those thoughts and feelings are unknown to me. Lynne Soraya, a writer who has autism describes it this way in  Empathy, Mindblindness, and Theory of Mind:

…I absolutely understand that people have their own plans, thoughts, and points of view – but those plans, thoughts, and points of view are often a mystery to me.

The similar thing occurs to me. I am cognizant that other people have thoughts and feelings but the nature of those thoughts and feelings are unknown to me…especially people’s reactions to something I have done. The Theory of Mind even extends into the behaviors of a person with autism as they are often unaware that their actions may have an effect on other people and the reactions to the behavior may also be misunderstood.

The solution to these problems is simple: written communication.  According to Tom Berney communication with a person with Asperger’s may be abnormal.

…less obvious conversational abnormality includes unrecognised, underlying discrepancies between verbal and non-verbal language, and between comprehension and expression. These can lead both the affected individual and those around him to misjudge his abilities, expectations being either too high or too low. Very often, reading works where listening has brought incomprehension. Often, the life of someone with Asperger syndrome can be transformed if as much as possible is presented to him in writing.

When possible clear written guidelines of what behavior is unacceptable is preferred.  A clear and concise note may explain the offending behavior and can help clear things up. Email is often substituted by autistics for telephone communication for this reason.

 

 

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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.

A syndrome for success

From A syndrome for success – Health – Specials – smh.com.au.

People with Asperger’s Syndrome – a developmental disorder on the autistic spectrum – may seem socially odd and they may have difficult relationships with their partners, children and parents, but they’re in good company.

Director Steven Spielberg has been diagnosed with AS. Einstein probably had it. Researchers speculate that Mozart, Michelangelo and Andy Warhol may have had Asperger’s traits. Bill Gates also seems to have some AS traits.

“Most of the major advances in science and art have been made by people with Asperger’s, from Mozart to Einstein,” says Dr Tony Attwood, a Brisbane-based world authority on the disorder. He describes AS as a different way of thinking.

Also there was this nugget in the article:

Judy Singer is the co-ordinator of ASPAR, a support group for the adult children of a parent with Asperger’s Syndrome. Singer’s mother has AS – something Singer only realised when her own daughter was diagnosed.

“Medical classification systems have finally caught up with something that every six-year-old schoolyard bully has been able to diagnose at sight since time immemorial,” Singer writes on her website, describing Asperger’s as the “nerd’s disorder”. Asperger’s support groups and rights groups abound on the internet, where some “Aspies” (as they’re fondly known) decry the persecution they have suffered at the hands of non-autistic people, whom they call “neurotypicals” or “NTs”.

I highly encourage anyone who reads this post to read the aforementioned article. It may be six years old, but I think it is one of the best articles about Asperger’s Syndrome.

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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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