Psychology Today Blogs - Asperger's Diary

Autistic Aloneness: When Coping Mechanisms Go Bad

Lynne Soraya — Sun, 11 May 2008 15:38:07 -0700

Navigating in the "normal" world, for a person with Asperger's, can be difficult, if not downright painful. The most difficult area for me to handle, personally, is rejection. While some people with autism or Asperger's report a reduced desire for human attachment, the reality for many of us is to want it very much, but struggle to achieve it.

Researchers often call this difficulty to connect with others "autistic aloneness." Like many people like me, I have learned to mimic social behavior well enough to get along. I work, have friends, and social relationships...but the real issue comes when things get beyond superficial. When the very coping mechanisms that get us through surface interactions, not only fail, but cause additional problems.

Intimacy can be a very difficult thing for a person on the spectrum. Everyday interactions can be "scripted:"

"Hi, how're you?"
"Fine, how're you?"
"Just fine, thank you..."

But when you get into the more complex areas of social interactions, it can be very challenging. By default, people on the autistic spectrum have trouble reading others, and predicting how they will react to things. This can make for a very jarring life experience. You can feel like you're driving down a road blind - and relationships can become very fear based. If you cannot read other people's subtle body language, how can you see the problems coming down the pike, until you've already collided? How can you predict what will happen next?

An aspect missed by many mainstream articles and coverage on the subject is this - while those on the autism spectrum have trouble reading so called "normal" people, the reverse is true as well. Many of the offshoots of the way our minds work can be routinely misinterpreted, leading us to have difficulties in relationships and relatedness to others.

For example, I am very methodical in how I approach certain things, and I don't feel safe unless I have looked at the majority of possible barriers I could encounter, and determined how to address them, in advance. I have had many times in life when I have gone into a situation and badly failed because I was unprepared and froze up. Especially when social factors are involved, and the outcome is very important, I feel very anxious, even panicked, going into a situation without having done this "prep work."

The success of my "scripted" approach to the world depends on being prepared for all eventualities. I don't show this side to many people, but to those who do see it, can find it very tiring. In fact, it's very tiring for me, but the alternative is failing spectacularly. If not prepared, I am like a computer without the proper programming - because my instincts in these areas are inadequate, or simply nonexistent.

Everyone has frustrations and aggravations that they encounter in social relationships with those they love, but for people on the spectrum, and those that love them, these types of coping mechanisms can take the average stresses to the next level. It's very painful for me at times, that the root of some of my success cause a side affect of estrangement from the relationships I value, as they misunderstand, or become frustrated with them.

From a non-spectrum point of view, many of these types of coping mechanisms are routinely misinterpreted. When I respond to a recommendation with a question such as, "What if X happens?" others view this as a rejection of their recommendation, which frequently it is not at all. It is actually often the opposite. It means I have accepted the recommendation as something that should be done, and am asking the proper questions to execute the suggestion, building the "program" or "script" I need to do respond to barriers and navigate the interaction. But, others can think I am either being difficult, ridiculous, or negative, "shooting down" the suggestion as soon as it's offered.

There are times when I find the social world of others mystifying. Within my understanding of the social world, I try to reach out to others, care about others, and be the best person that I can be, but there are times that I feel that I am spinning my wheels. My overtures to express love fall into the abyss of Asperger's - creating wide distances between me and those I love.

It can make me very angry - angry at the misunderstandings, frustrated at the judgments imposed upon me by those misunderstandings, and aggravated at the persistence of those misunderstandings, despite my repeated attempts to make myself understood. Do we all have to be the same to be accepted in this world? Is the simple fact of having autism or Asperger's mean a lifetime of aloneness, even when you are with others?

Art and Neurodiversity: When Is Art Just Art?

Lynne Soraya — Sun, 04 May 2008 15:54:58 -0700

Fellow PT blogger Cathy Malchiodi recently adressed the subject of neurodiversity in her post The Art of Neurodiversity. In it, Ms. Malchiodi discusses the work of Stephen Wiltshire, an artist with autism known for his remarkable talent for duplicating scenes with photographic accuracy.

Inspired by Peter D. Kramer's recent post on the possible connections between mental illness and creativity (Mental Illness and Creativity: Does Treatment Hurt or Help?), Ms. Malchiodi asks the very real question - should any type of diagnosis, psychological or neurological, come into play when looking at art, or is art just art?

I think it's a very valid question. Good art is good art, no matter what the reason for the artist's talent. However, any time there is any outlier, extreme ability, or extreme disability in any area, it's natural for the scientifically curious to wonder what caused the difference.

For those of us on the autistic spectrum, that scientific curiousity can also meld with the desire to understand our own situation. Why were we made the way we were? What if there's a flip side to our disabilities? What's the upside? Neurodiversity is a controversial topic - some might argue that it's merely another "PC" trend, but I think at its root is a very common, understandable need. To be accepted.

I have touched on subject of neurodiversity before in this blog, in my post Neurological Disorder or Natural Diversity?. Based on what I wrote there, you might believe that I am squarely on the neurodiversity side...but as with everything, I think it's more complicated than that.

I do sympathize with the idea of neurodiversity. Not only for my own personal reasons, but for the simply scientific question: If the genes for autism/Asperger's are wholly negative, why do they remain in the gene pool?

On the other hand, even if one argues that human ability is a continuum, and that autism and Asperger's are at the far end of that continuum, it's still the far end. It's still an outlier. Whether you want to classify them as "disorders" or not, the reality is they are not common ("normal"), and therefore are "abnormal".

What is important about neurodiversity is the spotlight it places on the need for tolerance. We don't fit the mainstream mold, but we have real value to add to the world. We may not be what the world would call "normal," but that in itself can be an advantage. Unfortunately, this advantage is lost when people are blinded to this by focusing on what they judge we "should be" versus what we are.

Difference is not taken well in mainstream society, which is why bullying is such a problem for kids with autism and Asperger's. Adults may hide their distaste for the different behind masks of civility - kids don't. Because of that, kids with autism and Asperger's often become targets of brutal bullying, made worse because of their innate naiveté and lack of understanding of social mores.

In the adult world, intolerance may be more subtle, but sometimes even less so. It's no question that autism and Asperger's can be very debilitating - but the fact is that many of us out there live very productive lives. It can be very frustrating to have your efforts in life discounted because you're viewed as being "sick" or having a "disorder."

Then, there is the law of unintended consequences. If there is a connection between autism/Asperger's, or any other condition, and special talents, what would it do to the gene pool if you were to eliminate these conditions altogether? Would we also be eliminating the genetics that predispose the person to their special talents, be it in art, mathematics, engineering, or any other?

If any treatment can make a person's life easier, and minimize the negative symptoms of autism/Asperger's, I'm all for it. The more you can minimize your challenges, the more productive you can be. And, to Ms. Malchiodi's point, if a person with autism or Asperger's produces great art, it should be so recognized - not as great autistic art, but as great art. Period.

The Power of Presupposition

Lynne Soraya — Sun, 27 Apr 2008 17:03:28 -0700

Presuppositions. We all know what they are -- but what part do they play in our interactions?

Any member of a minority group will tell you stories in which they felt that they have been unfairly stereotyped - in which the other person made a presupposition about their character dependent on certain criteria - be it age, gender, race, or some other factor.

These are obvious cases of presuppositions impacting our social interaction. But are there situations in which presuppositions more subtly impact interactions?

If you reach out to touch someone, and they jerk away, do you make a presupposition as to what that means?

If someone is habitually quiet, do you make presuppositions regarding their intelligence or competence?

As I have learned about autism and Asperger's Syndrome, I have learned to question certain aspects of my experience. Things that I accepted as "normal," because I experienced them routinely, I began to realize were really uncommon.

The phantom taste of lemon in my mouth, when seeing a certain color of yellow. Sound effects that seem indelibly associated in my mind with certain people, faces or features. The fascination of the sparkles glinting off a metallic sticker in the midsummer sun. The pain which shoots through my body if I am startled.

What I have realized in comparing notes with other people on and off the autism spectrum is this: there are an unlimited variety of ways in which people experience the world. Even in a world that puts a high value and price on the "normal" - there really is no such thing.

This variety means that no person has an identical perception to another. We celebrate this concept in an emotional and experiential sense - that no person has the exact same experiences or emotions - but I feel that this also extends far beyond this.

Reading the works of such neurologists as Oliver Sacks and V. Ramachandran - it becomes clear that the variation in the human experience is very affected by our brains interpret the world around us, and this varies widely.

Being the concrete beings we are, I believe many people miss this. In a "what you see is what you get" world - where is the room to realize that what your brain "sees" when looking at an object, person, or situation, may be completely different than what my brain "sees"? And what presuppositions will that assumption cause you to make?

I think this a common root of some of the social issues experienced by people on the autism spectrum, or others who have similar, invisible disabilities. People seem to make the default presupposition that your experience is similar to theirs, unless you tell them otherwise.

For example, my brain is not particularly efficient in decoding sounds and speech. The net result is that sometimes there's a noticeable delay between my hearing a sound, and my brain decoding it. I'll hear some muffled, unrecognizeable sound, say "What?", then a second later my brain will decode it as speech. What does this lead to when the other person makes the assumption that my hearing/neurology is "normal"? The presupposition that I really heard them in the first place then lied about it, which is not true at all.

Many articles about autism written from the outside perspective fall prey to this type of thinking as well. A "normal" person who looks at typical autistic behavior - avoiding eye contact, not talking, and avoiding personal contact - tends to make the assumption that this behavior means the same thing that it would mean in a person who does not have autism. This leads to blanket statements such as "People with autism have no desire for human contact."

The question is - do you know this, or is it a presupposition? Especially if the person in non-verbal - can you make that presupposition? Or could it be that the person wants interaction, but finds it painful or difficult to do so?

This goes both ways - until I began questioning the aspects of my experience that are variant, I assumed that they were "normal." It was a revelation to realize that not everyone thinks in pictures, or feel pain when startled - and it meant that I had to change some of my presuppositions.

I used to think that people who intentionally startled others were being cruel, perhaps even sadistic. How else can you describe someone who intententionally causes someone else pain for their own amusement? The realization that not everybody experiences pain in this situation made me shift my paradigm and change my presupposition.

So, how are your presuppositions influencing how you interact with and perceive others? Are there any people you may be pre-judging based on presuppositions that may be faulty?

Autism: The Musical (On The Importance of Teachers)

Lynne Soraya — Sat, 19 Apr 2008 17:53:19 -0700

Unless a person personally knows someone with autism or Asperger's (and has experienced just what we can do), the first thing that doesn't jump to mind isn't talent, it's disability. It's what people with autism or Asperger's Syndrome can't do, not what they can. HBO's recent documentary Autism: The Musical, follows a mother's quest to challenge those pre-suppositions, both for her child and others like him.

The documentary chronicles the first production of the The Miracle Project, an L.A. based theater group for autistic children and their siblings. Elaine Hall (also known as Coach E), the founder of the Miracle Project, is an accomplished theater coach, and mother of a son who has autism.

As a person on the autistic spectrum myself, it's a little uncanny to watch these children who are so much like I was. But it makes it all the more impactful to understand the difference Coach E is making in these kids' lives. I find myself wishing that programs such as this one were available when I was a child.

Obviously very social (very much opposite of the average person with Asperger's/autism), Coach E demonstrates an incredibly intuitive and empathetic sense of how to interact with autistic children. Teachers who are used to dealing with "normal" kids, can often find autistic kids very difficult, because they don't understand why they act the way they do. When many teachers might brand one of these children as "just being difficult," Coach E seems to understand.

I can remember as a child having many difficulties with teachers who were used to "normal" kids, who had no idea how to deal with me - and my memories of being in their classes are miserable. With these teachers, you often felt like you couldn't win. It was like your hair was on fire, but they couldn't see it. When you finally couldn't stand it any more, you would run to try to put out the fire, and they would punish you for leaving your seat, and, to add insult to injury, accuse you of "just being difficult," or accuse you of exaggerating - "It can't hurt that bad."

I had several teachers of Coach E's caliber in my younger years, and I have to say, it makes all the difference. Perhaps not coincidentally, these teachers were often theater or arts teachers. I can tell you, that I credit these teachers with the majority of my successes in life.

A few years ago, I came across a report published by the National Autistic Society in the UK, which literally made me cry. The report cited some alarming statistics: according to their surveys, only 6% of adults on the autism spectrum were employed full time, and only 8% were living independently. Reading this brought home to me how incredibly blessed I was to have teachers and mentors in my life that knew how to reach me - to pull me out of my own world, and equip me with the life skills I needed to bust those statistics.

I can only be grateful for people like Coach E, who, through teaching the next generation, are helping the world to learn that kids with autism and Asperger's can be more than what most people assume. Of the children depicted in the documentary, her son, Neal, appears to have the greatest challenges. When others have urged her to institutionalize him, she fights to bring him out of his world into our world. This is what my teachers did for me, and I know that in his adulthood, he will be as grateful to her for it, as I am.

Autism: The Musical will make you cry. It will make you grateful. It will make you question what you think you know about ability, and about the world we live in. It will make you sad, and it will make you rejoice - and it will make you want to be a part of the world that Coach E is creating. It will make you want to believe.

What Does It Mean To Have Asperger Syndrome?

Lynne Soraya — Sat, 12 Apr 2008 21:14:03 -0700

What is this Asperger's Syndrome, anyway? As I alluded to in my previous post, Neurological Disorder or Natural Diversity?, after many years of knowing that I was different, I finally learned why when I read Wired Magazine (The Geek Syndrome), which described an autism spectrum disorder called Asperger's Syndrome.

The more I read the descriptions of these people, the more I saw myself.The clincher came when, at the end, they provided a copy of Simon Baron-Cohen’s Autism Quotient Test, a questionnaire designed to indicate the presence of autistic traits. I took it on the spot and scored very high – and I realized I was onto something, and I began to learn about Asperger’s and what it meant to my life.

So, overall, what does it mean to have Asperger’s? How does it affect how a person interacts with the world? What are the challenges?

In general, people with Asperger’s generally have trouble with social interaction, communication, as well as regulation of the motor skills and sensory systems.They also can develop obsessive and compulsive tendencies, which manifest themselves in various ways. I’ve said many times that there are many “flavors” of Asperger’s – but I’ll touch on some of the common areas of challenge:

Social Skills

Many people with Asperger’s appear to be “nerds” or “geeks.” Kind people might call us “eccentric." Socially, we must learn by rote what your average person picks up by instinct, such as the interpretation of facial expressions, other’s emotions, or social overtures.

We may only sporadically pick up unwritten social rules, or we may not learn to execute them in an appropriate way. Like a computer, we must figure social situations out logically, and build sets of instructions for each situation, which makes interaction extremely painstaking and difficult. Because of this, we lag behind our peers in social skills, and may come to avoid social interaction altogether.

Many of those of us who have learned to cope with this in adulthood, have developed a comprehensive program, “social scripts,” if you will, to logically handle social situations. As these become more and more complex, the more we are able to “act normal” – but this is simulation. We think differently, and must shoe-horn our thinking processes into a social world that is, for us, completely alien.

It is also very difficult for many of us to learn to use and interpret body language. We may have difficulty looking someone in the eye, and may not use appropriate facial expressions. Because of this, we can be very misunderstood by people who cannot “read” what we are thinking and feeling through our body language, because we don’t know how to convey it or even realize that others do this. Many find it very difficult to look another person in the eye, or if they do, appear to do so in a way that may feel to the other person as “stiff” or “unnatural.”

Verbal Communication:

Unlike people with “classic” autism, people with Asperger syndrome typically do not appear to have any significant delays in the development of language. Some of us even speak early, but the quality of our speech is different. Language is used in a very atypical way.

Like our social skills, it’s learned by rote. The social quotient is lacking – we don’t fully understand (until taught), the social aspects of language.To us, it begins as a simple means of information exchange, not as a means of connecting with people (for example, the concept and execution of “small talk” can be difficult for someone with Asperger’s).

We may not master the art of using inflection to imbue language with meaning, and so develop a very monotonous or odd manner of speech. We also frequently miss the social cues that tell us what language to use when, and how often – so we may talk too much, too little, use overly formal, or informal language, or use inappropriate language for a specific situation (for example, swearing in front of a boss, or speaking overly familiarly to an authority figure).

Ironically, some children can appear very advanced, because we will pick up very sophisticated “adult” language – either from listening to adults, or from reading books. This can lead to further social ostracization from other kids, who’ll say “How come you talk like a grown up?”

On the other side, seemingly “simple” concepts as pronouns may throw a person with Asperger’s. A child learning to talk may refer to everyone using the same pronoun, or refer to themselves in third person. The concept that a single person can be referred to using several different pronouns, and those pronouns can be used for multiple people, can be a difficult one. In another example, as a child, a person I know observed his parents referring to each other using their first names, or endearments such as “honey” – and adopted the same manner of address. All attempts during his childhood to break him of the habit failed. He never used “mama” or “dada”, or later “mom” or “dad” to refer to his parents. Although he now understands how most people address to their parents, in his adulthood, he still refers to his parents by their first names. The habit is ingrained.

Interests/Obsessions:

From a young age, most people with Asperger’s develop a specific “pet subject,” which they will throw all their energy and time into learning. Most frequently, a person with Asperger’s will choose only one at a time (or as many people with Asperger’s will say, it chooses them), and it will become the core of their lives. The special interest often fall in to the areas of science, mathematics, engineering, or mechanics, but there are also many people who develop interests in art, writing, or other creative pursuits.

As adults, we will often be drawn by that special interest into our careers. Many scientists, computer programmers, and academics are believed to have Asperger’s. We typically have prodigious memories, which allow us to catalog and store large amounts of information, and a laser focus to acquire all possible information on a subject.

In order to keep order in our world, and cope with our other challenges, many people with Asperger’s develop a very rigid “rules based” way of doing things. Many struggle with change, and prefer, and almost obsessively maintain “sameness” in their world. Because of the lack of certain instincts, and our “script based” way of relating to the world, we have trouble varying routines. We have to rely on rote.

Sensory Difficulties:

Because the nervous system is wired differently in a person with Asperger’s, we experience the world very differently. We can be oversensitive or undersensitive to certain stimuli. Smells or sounds that may not bother another, may be incredibly intrusive to us. We might not be able bear certain textures. The brain and nervous system my overload when any one sense, or combination of senses, is overwhelmed. A loud stadium, or big crowd may cause us intense stress and perhaps an angry outburst. Even certain types of lighting might cause distress.

Motor Skills:

Another symptom of a differently wired neurological system can be a difficulty in coordinating movement. In short, we’re often clumsy. A person with Asperger’s may struggle with sports, or other activities that require coordination. We may be unable to sense our bodies in space, and therefore constantly hurt ourselves by bumping into things. Further, handwriting can be a very difficult and laborious process.

While navigating the social realm can feel to us like driving a race car blindfolded, but many of us have learned to compensate. With the right teachers and mentors, we learn. As we get older, we learn. As I mentioned in my first post (referenced above), there can be many advantages. Because our brains are different, we think differently, which can lead to “out of the box” solutions that your average person does not think of.

Our extreme ability to focus, combined with our intense special interests can make us extremely effective in our field, whatever that may be. We typically have very good, sometimes encyclopedic memories, and have IQs in average to well above average range. Many “geniuses” such as Mozart, and Albert Einstein have been thought to have Asperger’s or high functioning autism.

So, those of us who learn to cope with the difficulties, can develop lives as fulfilling as any other. Just a little differently.

Does TV Have To Be Mean To Be Seen?

Lynne Soraya — Sat, 05 Apr 2008 21:24:42 -0700

Caustic comments, humiliating putdowns, callous behavior. Lately, mainstream media seems to depict the worst in human nature.

American Idol was originally pitched as the "Search for a Superstar." Now it seams that the mainstream attraction is the cruel tongue of Simon Cowell, ripping the hopefuls to shreds. Similar bad behavior seems to be the attraction of celebrity cook Gordon Ramsey's shows Hell's Kitchen and Kitchen Nightmares.

Talk shows like the Jerry Springer Show or Maury Povich always put me in mind of a bloodthirsty crowd in a Roman Coliseum. Even court shows aren't complete without the condescending, "Shut up, you're an idiot" tone.

On the wildly popular show The Sopranos, we watched a pregnant 18 year old girl brutally beaten to death, dismemberments, and countless people getting "whacked." Shows like Oz have similar violence and death counts. From an outsider's perspective, I have to wonder, is this really the embodiment of mainstream values?

In a world which routinely characterizes those on the the autistic spectrum as "lacking empathy" by definition, I struggle with the evidence of widespread lack of empathy in the mainstream culture. Is this really the exemplification of "normal" empathy, or simply the extreme end of the (non-autistic) spectrum?

Have we become so inured to callous behavior that it's are now considered commonplace? Does TV have to be mean to get seen?

Neurological Disorder or Natural Diversity?

Lynne Soraya — Fri, 28 Mar 2008 20:54:43 -0700

Are conditions like autism and Asperger's Syndrome truly disorders, or necessary variations in human development?

I read, in Dr. Kramer's post, "Weird and Proud," about an article in Wired Magazine article about a woman with autism who believes that autism is not a disorder, but a different way of being. Carlin Flora's follow up "Weird and Wonderful" further followed this train of thought, bringing out examples of other people whose challenges became strengths.

While it's refreshing to see members of the general population exploring this idea, especially a respected psychiatrist like Dr. Kramer, it's not a new one to those of us who live on the autistic spectrum. Many of us have come to realize that our disabilities often come with a compensating ability.

In her book, Thinking in Pictures, Temple Grandin Ph.D., a noted animal scientist, and author with autism, dedicated a chapter of her book, "Einstein's Second Cousin," to exploring the genetics of autism. In it, she speculates that the clusters of genes that cause such differences as autism, manic-depression, and schizophrenia are the same that carry traits such as creativity, or mathematical talent. She writes, "If the genes that cause autism and other disorders such as manic-depression were eliminated, the world might be left to boring conformists with few creative ideas. The interacting cluster of genes that cause autism, manic-depression, and schizophrenia probably has a beneficial effect in small doses."

Personally, I believe that this is true. In a world of natural selection, why would the genes for autism continue, unless they also imparted some benefit? It is unquestionable in my mind that Asperger's has given me many gifts along with the challenges. Talents in art, music, computers, memory, and intellectual pursuits have been the basis of my life and the means by which I connect to the world.

In "The Geek Syndrome" (the article that finally led me to the diagnosis of Asperger's), journalist Steve Silberman also speculated that the genes for autism and Asperger's go hand in hand with abilities in math and technology. He writes, "It's a familiar joke in the industry that many of the hardcore programmers in IT strongholds like Intel, Adobe, and Silicon Graphics - coming to work early, leaving late, sucking down Big Gulps in their cubicles while they code for hours - are residing somewhere in Asperger's domain. Kathryn Stewart, director of the Orion Academy, a high school for high-functioning kids in Moraga, California, calls Asperger's syndrome 'the engineers' disorder.' Bill Gates is regularly diagnosed in the press: His single-minded focus on technical minutiae, rocking motions, and flat tone of voice are all suggestive of an adult with some trace of the disorder. Dov's father told me that his friends in the Valley say many of their coworkers 'could be diagnosed with ODD - they're odd.' In Microserfs, novelist Douglas Coupland observes, 'I think all tech people are slightly autistic.'"

Sites like Kathleen Seidel's neurodiversity.com have accumulated impressive lists of celebrities and historical figures with autistic traits, citing such notables as Stephen Spielberg, Nikola Tesla and Andy Warhol. In his books Diagnosing Jefferson and Asperger's and Self-Esteem: Insight and Hope Through Historical Role Models, journalist and author Norm Ledgin looks at the autistic traits of Thomas Jefferson, Albert Einstein, Orson Welles, Marie Curie, Gregor Mendel, and Wolfgang Mozart.

Could it be that just as we have variations in eye color, hair color, height, body shape and size, that we were designed to have variations in neurological wiring? That certain of us humans were designed to suffer in the social realm, in order to realize the benefits of certain specific intellectual abilities, such as abilities in math, technology, art, music, or science? If tomorrow, these conditions were eliminated, would we also eliminate these talents?