Thursday, June 30, 2011

My take on a piece of Autistic Fiction

Right before Christmas last year, I bought a book called "House Rules" by Jodi Picoult.  One of my coworkers had read it and told me that it was about autism, so I was interested in reading it.  This particular author specializes in complex dramas involving legal issues.  The book is about a young man with Aspergers who is accused of murder.  I started reading this book to see how this author portrayed the first person perspective of the boy with autism.  After a few days I put down the book and have not been back to it since.

This book affected me a lot more than I had anticipated it would.  Having read several books by the same author, I had some idea of what to expect from her plot arrangements, so I thought I knew what I was getting myself into.  I was wrong.  Watching this fictional boy with Aspergers get into these situations where he is not understood for what he really is and instead is thought of as a criminal was very depressing to me.  If someone of legal stature is that unwilling to understand that the autism mind works differently, then something along the lines of this book plot could really happen.  I found the thought depressing.  At some point my dad asked me why I was feeling down, and I told him because of this book.  He told me if it makes me feel bad, then stop reading it.  So I did.

To make one thing clear, I am not telling people to avoid this book.  I am saying that the book affected me deeply on a personal level at the time when I first started reading it.  I have enjoyed several other books by this same author.  This writer has a very compelling writing style and is a good storyteller.  I have confidence that I will reach a point in the future when I can read this book and not be affected by it, like I was before.

Wednesday, June 29, 2011

Autistic Interests

Many people with autism, particularly people with Aspergers Syndrome, sometimes have a single interest that amounts to an obsession in their minds. They funnel their entire being into this interest over a lifetime.  This interest could be anything ranging from Ancient Greek Mythology, to TV shows, even to genres such as fantasy or horror. 

You could not find anyone more knowledgeable about their subject of interest than a person with Aspergers Syndrome. These individuals on the spectrum dedicate their entire lives to understanding their interest.  A problem that loved ones often experience is that this narrow-minded focus is not naturally extended into other essential areas, which could be problematic when it comes to school.  However, in some cases, I have heard of this interest being used as a tool for learning, although I have no personal experience in that area.  My interest was never used to support learning in school.

When I was younger, I was well known for being obsessed with Star Wars.  From age six to fourteen, I would talk about nothing else with the same feverish enthusiasm as I did with Star Wars.  I knew all six movies by heart (and still do) and would often quote them to people, much to their displeasure.  I knew the score from the movies and could play it on my clarinet. 

I have long since grown out of this interest as an obsession. I owned quite a bit a Star Wars merchandise when I was younger, but have given much of it away over the years.  However I am still the proud owner of at least fifty Star Wars books from the expanded universe. I have not yet read them all, but I plan to at some point.  My interests are more varied now than they were then, but Star Wars will always have a place in my life.

Sunday, June 26, 2011

More about My Autism

I want to take a moment to explain about the type of autism that I have.  I have been using the term PDD-NOS quite often and I don't think that I have elaborated enough about exactly what type of autism this is.  To start off, I want to say that PDD-NOS is not typical for autism.  No two cases are the same.  This specific diagnosis shows some characteristics of autism, but not enough to be diagnosed as any of the major categories.  It can go undiagnosed, or misdiagnosed for years, like in my case, because of the lack of solid criteria.

I am going to quote some criteria I found that is used for diagnosing PDD-NOS from Autism Speaks:

When might a person receive a diagnosis of PDD-NOS?
That will vary, of course, but in one study, researchers found that those with PDD-NOS could be placed in one of three very different subgroups:
  • A high-functioning group (24%) who resembled people with Asperger syndrome but had transient language delay or mild cognitive impairment (such that they could not receive the Asperger diagnosis which requires no speech or cognitive delay).
  • A group (24%) who resembled people with autism but who had a late age of onset, or otherwise did not meet the criteria for autism.
  • A group (52%) who were autistic-like, but displayed fewer stereotyped and repetitive behavior.
I would have to say that I am in the first group, or the high functioning group.  I did have a language delay when I was younger.  I was developing normally until age two when I lost my language skills.  I had to start from scratch and did not start speaking again until the following summer.

This delay has affected me ever since then.  I found myself behind in development when compared to other people in my age group, even in my graduating class.  When I graduated from high school, I could not help feeling that there had been a mistake, never mind that I graduated with a 3.83 GPA and as a member of the National Honor Society.  It was like I was a sixteen year old who had graduated from high school early.  For all practical purposes, I was sixteen in terms of development due to the loss of language skills at age two.

I still don't know what caused it and pointing blame is not going to change anything, so I have learned to live with it.  I hope that I can use my perspective to help others to better understand autism.

4. Walker, D.R., Thompson, A., Zwaigenbaum, L, Goldberg, J., Bryson, S.E., Mahoney, W.J., Strawbridge, C.P., & Szatmari, P. (2004). Specifying PDD-NOS: A comparison of PDD-NOS, Asperger syndrome, and autism. Journal of the American Academy of Child and Adolescent Psychiatry, 43(2), 172-80.  Abstract

Saturday, June 25, 2011

Autism and Animals

When I was going through my difficult times when I was eleven/twelve years old, I found companionship in my three cats, and particularly, the youngest cat we had just received the month before I started seventh grade.  This little black and white cat was an enormous comfort for me.  He still is at this present day.

With this cat, I found nonjudgmental acceptance and unconditional love that even I couldn't deny, deep within my depression.  A cat (or dog) does not care if you are not like the other kids in class, or if you act differently than people expect.  The dog or cat only wants to give, and receive affection.  I currently have four cats and each one of them holds a special place for me (even the youngest one, who will bite anyone who touches her).

It had been stated through different studies that cats exhibit some autistic characteristics, such as the preference of a rigid routine, a severe dislike of change, and probably more that I have not listed.  I am less interested in the scientific implications, and more interested in enjoying the company of my four furry friends while I have them in my life.

Friday, June 24, 2011

Thinking with Autism

One thing that I have discovered over the years is that people with autism have great difficulty relating the part of the mind that is different than those who don't have autism.  We have trouble explaining the reasoning behind autistic behaviors because it is difficult to put those feelings and reasoning into words.  In my opinion, the reason for this is because people with autism think using those feelings and the meaning of such thoughts bypass the use of language.

I have been searching the web a lot lately, looking for first person accounts about autism, and I found this video that a psychology student used in a college project about autism.  In the video, she was interviewing her younger brother, who has aspergers.  I am going to include a link to this video just in case anyone is interested in viewing it.

During this video, eleven year old Zach who has aspergers tries to explain why he quotes videos he has seen before as a form of communication.  This is a widely publicized trait of aspergers.  It has been used in books and in the movie "Rain Man."   Zach has great difficulty explaining his mindset behind this trait and instead resorts to the trait and quotes what he has heard about the autism. 

I think that this is because while that action is taking place, Zach, or any autistic child, is in a mindset where there is no reasoning to achieve meaning.  I am finding it difficult myself to explain this mindset and instead find a quote from "Star Trek" coming to mind.  I am going to include this quote and see if any meaning can be derived.  It is highly relevant to what I am trying to say: In "Star Trek, Episode Four, The Voyage Home", Dr. McCoy is trying to gain insight from Spock about his views on death.  Spock answers:  "It would be impossible to discuss the subject without a common frame or reverent."  This seems to be the answer to my question. I think this means that it is impossible to relate an autistic mind to a non-autistic mind without a reverent, or something to compare it to.  That is why video quotes come to mind to not only myself, but others with autism.

Thursday, June 23, 2011

Autism and Unusual Musical Talent

There is more emphasis placed on the things that those with autism can't do rather than the unusual talents that they might possess.  I believe that if there is something taken away from the mind, in the case of autism, that there is something else in the mind making up.  It can be thought of as a kind of exchange.  This video is an excellent example of what can happen in such an exchange: it is about  teenager with autism who is a musical genius.

I have a similar talent to this, but not to this extreme.  I am able to memorize music or movies after watching them time after time and be able to play them back in my head.  It was very useful when I was in high school marching band as I was able to memorize our music without very much effort and was able to retain that music for years afterward.  I can still play my part from the marching show freshman year of high school when I haven't looked at the music in nearly nine years.  I have no such skills on the piano, as this musical genius can, but I can play the clarinet and, to a limited extent, mimic sounds that I hear.

Saturday, June 18, 2011

Accommodations Part Two

A more recent accommodation I received for my PDD-NOS was a program at Oakland University aimed towards helping high functioning autistic students make the transition into college life.  This program was called the Peer Transition Program.  An autistic student was paired with another student who had volunteered to participate in this program.  More likely than not, this student mentor was majoring in psychology and planned on helping autistic people for a living.  This student mentor would encourage the autistic student to become more active in the university with student organizations and campus life.

I was a participant in the Peer Transition program from September 2008 to January 2009.  At this time I was a transfer student from the community college level, so I had already been attending college for two years prior to entering this program.  My mentor encouraged me to join a student organization to become more involved with campus life.  My reason's for joining the program were to see what it might do for me, I didn't really have a specific outcome in mind.  After a few months, I decided to leave the program.  I had decided that I would rather socialize on my own terms because that is what I had been doing since high school, my experiences in this program had helped me to realize that.  My mentor was concerned that perhaps she should have done something different. I told her it wasn't her fault, I had received all the assistance that I was going to get from this program.

This is my own experience with such a program and other autistic college students may react differently.

Friday, June 17, 2011

Accommodations Part One

Over the years since I was diagnosed with PDD-NOS, I have received many accommodations from the school system.  In my next few entries, I am going to talk about some of the accommodations that have helped me to succeed in school.  While many of these "helping hands" have indeed been helpful, others have been a bit of a hindrance.  I speak only for myself on this matter, because other individuals with autism will respond differently to treatments.

One of the accommodations I received was the benefit of a special education classroom.  These special ed classes served a distinct purpose for me as I progressed through middle school and high school.  While in these classrooms, I discovered that I could indeed perform well in academic settings.  I found, however, that I did not need to put forward a lot of effort to succeed in special ed classrooms.  After I steadily progressed back into the mainstream classrooms, I continued to succeed and receive the A's and B's I had received in special ed classrooms.  In special ed classrooms, due to the small class size, I was not as quiet as I had been in mainstream classrooms.  I was more comfortable communicating with classmates and the teachers.

These benefits did come with a hindrance because students in mainstream classes did not look favorably on special ed classrooms, calling them "retard classes."  While my self esteem was improving academically attending these classes, I still felt socially inferior due to the barrier between mainstream classes and special ed classes.  For this reason, I did not disclose to my new high school band friends that I was taking special ed classes.  I still don't know if they would have treated me the same if they had known.  Keep in mind that these are my own experiences and do not reflect this accommodation as a whole.

Thursday, June 16, 2011

Oh! You have autism?!

Many people, some of them professionals who work with autistic people on a regular basis, have failed to recognize that I have autism until I either tell them, or in the case of the professional, they referred to my documents which listed the treatments I have received. When some people hear that I do indeed have the condition I have been told, with strong conviction, that there is nothing wrong with me.

I am going to explore a less finite topic into some of my feelings as to how people, even some who are familiar with autism, see the condition. To start off, I think that autistic people give off sort of an "aura," that, however faint it might be, can be perceived by others.  This aura is caused by the whatever neurological irregularities that make up a person's autism.  It may be obvious in those on the more severe side of the spectrum, or it can be much harder to see with more mild forms of the condition.  I am going to take a moment to define the term aura: "The distinctive atmosphere or quality that seems to surround and be generated by a person, thing, or place."

Those with high functioning autism can imitate acceptable social behaviors, but it does not seem completely natural.  Those who don't understand what autism is may not recognize that aura for what it is, even though they can still perceive it.  Someone might think the following about a person with high functioning autism (such as myself): "oh, he seems alright enough, but there is something about him..."

I have been working at my job at a local retail outlet for nearly five years, and all the time customers ask me whether I am new at this job.  I had a man ask me a question about the toy section this morning and before I could really answer he said "you're new here, right?"  This September, I would have been at this store for five years and I have experience in many different areas of the store ranging from cashier, to stocking merchandise, to receiving.  This got me thinking that my own autistic aura is mistaken most frequently for inexperience.  People with little exposure to autism, or even some that do, fail to recognize this aura for what it really is.

Saturday, June 11, 2011

When I was diagnosed with autism...

By the time I was first diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified, I was twelve years old and in seventh grade.  My sixth grade year had been so bad that my mom chose not to buy a yearbook for seventh grade, because this time of my life had become a time that we could not look back at without pain.

Autism was not the only thing I was dealing with by the time I reached seventh grade.  My ADHD was slipping out of my control and I was acting out, compulsively, in class. The medication I was taking for my ADHD was not doing what it was prescribed to do, and was instead causing psychotic side effects, to the point where my parents refused to give it to me.  I was also dealing with depression caused by a "chemical imbalance."  During sixth grade, my teachers were not taking the time to understand me, and were instead skating me by, without even telling my parents that there was a problem (my parents were outraged when they discovered this).  To cap it all, I was in middle school where, the fastest way to be cool is to put down someone else. I was a prime target for this from many of my classmates, which did nothing to help my depression.

It got to the point in seventh grade where I was taken out of school for a month to re-adjust my medication and be observed in a controlled environment.  This took place in October of 2000.  By that time, my self-esteem was at an all time low.  When I was told that I would be put in a center with people like myself, I was relieved, most of all to hear that there were indeed other people like myself.  The lack of tolerance from my classmates had really hit me hard.  At some point in that month, I remember driving home from this center and being told, tactfully, by my mom that I did not have what they had originally diagnosed me with at age three.  Instead, I had PDD-NOS.  I did not take in the full extent of that name of the condition, in fact I could not recall it moments after first hearing it deeming it as too complex.  I was more interested in the fact that what I was dealing with did in fact have a title, which meant that I was not the only person who had it.  Now that my downhill spiral had been abruptly halted, I could now turn around and start succeeding again.

Friday, June 10, 2011

Distingushing Autistic Behavior from Personality

Any parent wants to understand their children. For the parents of autistic children, the desire is perhaps greater because they have been told that their child is different and they should not have the same expectations for that autistic child than they would for another child without autism.  That is not easy for any parent to hear.

A question that arises, most especially among highly functioning autistic children (such as those with my condition, Pervasive Developmental Disorder-Not Otherwise Specified), is whether the tantrum this child is having is caused by autism or is it caused by another aspect of their personality (normal behavior)?  In other words, the parent might be asking themselves: should I be more lenient because the child does not mean to do this, or should I be firm and rate this behavior as unacceptable, no matter whether this is the child's fault or not?

This question depends entirely on the child.  I can offer what my parents did for me.  I was not diagnosed with autism until I was twelve, which is older than some children who have been diagnosed with the condition.

Before that time, I was being treated for ADHD (Attention Deficit Hyperactivity Disorder), so my parents were aware that there was something going on with me.  After I was diagnosed with autism, my parents continued to treat me like any other child, while making exceptions according to circumstance.  They made it clear to me that some types of behavior, whatever the cause, was unacceptable, no matter what my intentions were or whether the behavior was my fault.  The latter case was not really an issue because my medication was changed after I was diagnosed with autism, so my compulsive behavior was greatly reduced.

I cannot speak for every child in every situation but what my parents did for me worked.  They treated me for the most part like I was not autistic, so I acted like I wasn't autistic and I still do to an extent.  My autistic behaviors sometimes surface, but I have control over them.  I cannot guarantee that this approach will work for every child, but it is worth considering.

Tuesday, June 7, 2011

Sensory Overload Part Three

I recently moved to a new position at my retail job.  Instead of working as a cashier, I am now working in the clothing department stocking shelves.  This department is much smaller than the previous department I was working for.  While I had received the change I wanted, it came with challenges of its own.

I am more prone to sensory overload in this new position due to the lack of established routine.  As a cashier, it was easy to predict the work pace from the amount of customers present in the store.  I had a routine that I would stick to loyally and that would get me through the day without too much sensory overload, although it didn't always work.  I would say virtually the same speech to every customer.  "How are you doing today?"  "Did you find everything alright?"  As opportunity presented itself, I might talk about cats if I saw cat food; I might talk to the kids a little.  It was much easier to conceal that I was on the spectrum due to my ability to stick to this routine for extended periods of time.

In my new position, it is different.  I often have to stop what I'm doing to help customers.  There is virtually no way to predict when that might occur, so I have been caught off guard more than once.  To minimize my sensory overload, I might speak quickly, and sometime incoherently to keep the sensations from building up.  Other times, I might speak disjointedly and ask to clarify what might be obvious information to collect my thoughts, and again keep the sensations from building up.

Although it is easier than my position as a cashier in terms of workload, it is still a new experience which takes some getting used to.  To protect myself from sensory overload while being trained, I minimized my responses to mostly one or two word phrases.  This allowed me to absorb large amounts of new information without sensory overload. It is problematic because my new boss is having difficulty gauging exactly what I know about the position, but it can't be helped at this point.  It will get easier as I learn more, and most importantly, establish a routine.

Saturday, June 4, 2011

Sensory Overload Part Two

Three years after I was first diagnosed with PDD-NOS, I found myself improving quickly.  I played the clarinet in my high school marching band. I was ranked within the top sixty students of my class in terms of GPA. Admittibly, most of my classes were special education classes at that time.  I had a group of band friends to hang out with at school, although they did not know that I was taking special ed classes, let alone that I had autism.  They accepted me which was more than I had hoped for in the past, and I decided to keep those secrets to myself.

In a high school English class, we had someone come into the classroom, an administrator of some sort.  We were told not to pay any attention to her because she was here to watch the instructor and none of us.  She happened to sit right behind me while we were doing our activity for that day.  Keep in mind that this is a special ed class with only fourteen students in it.  I glanced back at the person, momentarily concerned that she had chose to sit behind me of all people, but I quickly lost interest.  A few weeks later, when my mom picked up the report from school, I realized that the person had in fact been observing me.

I was very interested in what the report contained.  This was part of a high school program to ensure that all special ed students were receiving the help they needed for the reasons they were taking those classes.  Most of the observations were intriguing, but the thing that interested me most was what she, the observer, had said about sensory overload.  She wrote in the report that I have my own ways to prevent sensory overload.  I was curious, not least of which because I was still predisposed to doubt my achievements, since not much time had passed since I was having difficulty. 

It was flattering to be praised for something in that manner, even though I did not fully understand what I had achieved.  Somehow, I had developed measures to ward off the overwhelming sensations that are aroused in a sensory overload, although it does not always work.  I don't even know if I can identify them, because all my defense mechanisms are situational.  I will try to give more specific details to how I deal with sensory overload in my next post.

Friday, June 3, 2011

Sensory Overload: Part One

In my next few posts, I am going to talk about a large issue that affects nearly all the members of the autistic spectrum called sensory overload.

To anyone not familiar with the term, I am going to define it using a description I found online: "Sensory overload (sometimes abbreviated to SO) is a condition where one or more of the senses are strained and it becomes difficult to focus on the task at hand. The term is commonly (but not exclusively) used in the context of autism/autism spectrum disorders."

As a member of the spectrum, this is something that I have dealt with my entire life.  There are many instances when a person has noticed that something is bothering me, and asks me what is wrong.  I normally have to come up with some sort of feeble excuse because: not only am I unable to articulate my intentions very well when my senses are overloaded; but it is way too much to explain, especially if the person has no idea that I have autism.

Wednesday, June 1, 2011

Lunchtime Observations

On my way to my summer class at Oakland University today, I stopped at a fast food restaurant to get some lunch.  It was fairly crowed with lively chatter and there were a few people in line in front of me.  Almost immediately, I recognized that the young man standing on his own before the cashier had a form of high functioning autism known as aspergers.  

Individuals with aspergers are characterized by higher-than-average intelligence but lack the basic social knowledge that many people take for granted.  This lack of social knowledge was evident in the way this young man spoke and through his body language.   The cashier recognized this and decided to use it to her advantage.  It was clear to me that this young man had entered the restaurant knowing exactly what he wanted to order.  The cashier offered him several desserts, putting social pressure on him to accept. He ended up spending more money than he had intended.

I understand why the cashier did what she did in the name of increasing sales in a poor economy, but this young man really did not stand a chance against the pressure she put on him.  It simply did not occur to him to refuse.  If it did, this impulse to disagree was overridden by the desire to avoid the sensations that arise from social conflict. Perhaps this young man recognized what he should have done once the social pressure had been lifted.  People with high functioning autism such as aspergers are smart enough to know they have social problems.  They just don’t know what to do about it.