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.

From Vincent Williams

Mr Williams, read my article from the The Orange County Register, which I have reposted here as well, and took the time to leave a comment on my blog. Because it was so well written, and so long, I felt it merited it’s own blog post.

From Vincent:

Well done, Robert! I’m an Aspie as well, albeit not formally diagnosed, 46, with a 12 year old son who is a diagnosed Aspie. When my wife and I were trying to figure out what was going on with him in his early years (especially since the pediatrician dismissed our questions/concerns outright), I stumbled on references to Asperger’s Syndrome. Reading the various traits and hallmarks was like reading into a mirror. Not only did it describe him, but it described me to a T. And, it also described my Dad as well, which led me to believe that AS is hereditary, and based on the levels of AS from my father to me and then to Ethan, I’m reasonably convinced that the “level” of AS is pronounced with each generation. Of course, I’m not a scientist or expert in any medical arena, but, like you said, I know us because I am one, and I witness and live it each day.

I grew up in Australia, and moved here to the US when I was 20 (1986). I was brilliant at school, would read encyclopedias for the hell of it, but at home I was a complete klutz. My folks wondered what the hell was wrong with me. Dad had the shortest temper on the planet, and I felt his wrath plenty over the years. On his good days, he sweat brilliance, knew everything about anything, and would talk paint off a wall (much to the chagrin of people he knew, who often had tuned out eons before but were captive to his ramblings). I got one hug out of the guy, which was prompted by me, and he still felt uncomfortable. We had a falling out in 1996, when I approached him over his days with the heavy hand, and I was basically ostracized. He died last year, and the family never mentioned it; I found out through a Google search for an obituary.

Depression, attention issues, lack of focus, constant distractions… that’s me. In fact, I came across your story as a result of being distracted from my normal work at home (graphic design/illustration). My teenage and 20’s years were miserable. It’s taken time to “grow out” of certain things, but I still tackle with various issues. I don’t have personal friends (real-life ones, away from the ‘net), and I’m not bothered by it. In fact, I’m more uncomfortable around people in casual settings, and would prefer to not be there. I work okay with people (I’m also part-time at Disneyland) but I’m there to work and then go home. (The kids are the best, I do enjoy interacting with them better than adults).

Ethan, the oldest of my two sons, is profoundly anti-social, and extremely awkward in conversation with anyone, family or stranger. At school, he’s brilliant, working in math beyond his age range, can spell anything, has a memory for history like a trap (got that from me), but has difficulty with comprehension and vocal sentence structure. He cannot stand tattoos but has taught himself to look away and ignore them (a world of difference from when it first manifested). The youngest, Gage (7) is mildly autistic, but not an Aspie, and is much more outgoing.

The difficulty lies in knowing that in order to help him overcome social obstacles, I need to be there to help, which presents some problems at times when I myself have similar issues. No amount of therapy or counseling is likely to help (been there, done that); it’s a matter of trial and error for all of us. There’s still some resistance from some circles; my mother doesn’t buy that I’m an Aspie, and it took her a long while to accept that diagnosis for Ethan. It can be a lonely environment to work in sometimes.

Well, I’ve rambled on long enough, just as Dad would, and now I must go collect the paint off the floor. (Metaphors I can do; Ethan wouldn’t get that at all).

Take care,

Vince
Anaheim Hills, CA

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.

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.

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.

 

 

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.