A Different Type of Diagnosis

I recently attended a meeting where a Special Education director asked me, as someone with a diagnosis of Asperger's Syndrome, whether I was upset that the diagnosis was "disappearing" with the release of the DSM-5.  I had to think about it before answering - I hadn't really given it much thought.  Since my diagnosis three years ago (at 37), I have always viewed myself as an Aspie, or having a diagnosis of Asperger's Syndrome.  However, that, to me, is only a label that has been placed on me by the observation of my behaviors or, more importantly, how my behaviors have exhibited themselves at different stages of my life.  No matter what label is placed on me because of those behaviors, I am different from those around me.  Any changes that the APA makes to the DSM cannot make me change that view of myself, whether I am Asperger's or Autistic or Socially Inept.  It will not change who I am or how I deal with my differences.

So, to get back to my story, I told her that, despite not being a major category of diagnosis, it will still be a subtype diagnosis, it's just that it will be under a different major title, that of Autism Spectrum Disabilities.  This, however, is not completely how I feel about it.  Let me elaborate...

The DSM has been the standard tool for diagnosing psychological differences for decades.  Compiled and published by the American Psychological Association (APA), this manual provides the codes which all types of organizations, from educational institutions to insurance companies, use for billing and organizing people into categories in which they fit best.  Providers of services have also used the DSM diagnoses to determine the most appropriate treatment for different disorders, be it psychological or pharmaceutical, or some combination of the two.  For example, under the DSM-IV-R, I was diagnosed with Asperger's Syndrome.  However, the diagnosis criteria is all behavioral in nature.  For example, when I received my diagnosis, I met the following criteria:

• DSM-IV DIAGNOSTIC CRITERIA FOR ASPERGER'S DISORDER
  (criteria I met are in italics)
  A.Qualitative impairment in social interaction, as manifested by at least two of the following:
  
  (1) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
  (2) failure to develop peer relationships appropriate to developmental level
  (3) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
  (4) lack of social or emotional reciprocity
  
  B.Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
  
  (1) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
  (2) apparently inflexible adherence to specific, nonfunctional routines or rituals
  (3) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
  (4) persistent preoccupation with parts of objects
  
  C.The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.
  
  D.There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).
  
  E.There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.
  
  F.Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.

However, these criteria are all based on how I was behaving at the time.  When I was undergoing my diagnosis, I was having difficulty at work, and the stress was exacerbating the presentation of these symptoms.  Two years later, I was in a job where I was appreciated and my stress levels were extremely low.  That means that, had I not sought therapy when I did, my behaviors would never have warranted a diagnosis of Asperger's.  Does that mean that in the past two year my Asperger's has gone away?  No, it's just under the surface.  It's still a part of who I am, but I just blend in with others much better now since I am under much less stress than I was three years ago.

And that, my friends, is why I am upset with the APA's decision to reclassify Asperger's  Syndrome, along with a ton of other psychological disorders in the DSM-5.  Asperger's Syndrome might share similarities with Autistic Disorder and other Pervasive Developmental Disorders, especially in the behaviors that those with AS/Autistic Disorder/PDD-NOS exhibit.  However, the treatment for these three disorders, along with most of the DSM-5 diagnoses cannot be entirely based on the behaviors that one exhibits.  That would be like treating someone who was limping with surgery to remove a bone chip form their knee (which may or may not exist).  Not all behaviors (limping, lack of social or emotional reciprocity) have the same cause.

So, then, how do we learn to treat people with psychological disorders?  Well, when the DSM-5 (which will be released and become effective on May 18), was announced and it's diagnosis criteria were released, the National Institute of Mental Health (NIMH) announced that the APA's insistence on basing diagnoses on behaviors rather than focusing on finding biological markers for these disorder was creating validity problems with the DSM.  They announced that they would be focusing their research efforts on their new RDoC:

The NIMH has launched the Research Domain Criteria (RDoC) project to transform diagnosis by incorporating genetics, imaging, cognitive science, and other levels of information to lay the foundation for a new classification system. 

The RDoC will hopefully replace the DSM in the future.  It will be a blessing for those who wish to have better mental health services for the population, but it may be a death knell for the pharmaceutical industry.  To have a diagnosis like ADHD have a biological marker that might have a simple medicinal treatment, all these meds that are now prescribed might be found to be useless.  However, for those of us who have been diagnosed with Asperger's, we will probably find that all the medications people have been prescribed for conditions similar to ADD, ADHD, and other co-morbid conditions have a negative effect on us.

I might be wrong.  The DSM-5 might be a good thing, but the way it diagnoses through behaviors is not the way medicine should work.  We need to create a biological way to diagnose psycholgical disorders, like the NIMH's RDoC.

Anxiety Rears its Ugly Head

Now, I am not one to admit this, but I sometimes get anxiety.  I HATE the fact that I sometimes feel anxious - I always like to think of myself as a calm, level-headed guy, but I am not always like that.  Plus, it's not enough to interfere with my daily functioning.  Not to say that it doesn't interfere, just that compared to my other issues (i.e. my depression, my Asperger's, my social issues), the level to which my anxiety affects my daily functioning is miniscule.  However, I got an e-mail last night that has me feeling anxious, and it makes me want to avoid doing anything today.

Now, growing up with Asperger's, I often saw things around me differently than others did.  I never felt the same way that others did, my sense of humor was different, I was more creative than many of my peers and had single areas in which I was interested, and they were NEVER the same as my peers.  I was often told by others that I saw things in the wrong way, or that my perspective was warped.  So, as a result, I came to question when people wanted to talk to me about things, not telling me what they were about first.  What did I do?  Am I in trouble?  What's wrong now?

As I got older, I began to not care about what people thought of me.  "I do the best I can," I'd say to myself.  "If people don't like it, or who I am, then to Hell with them!"  As I got into the workforce, I thought the same thing about my job.  If my boss asked me to do something, I did the best I could.  If it wasn't good enough, then I tried to do better, but I realized that some people are impossible to please.  So, if my best was still not good enough, then too bad.  This doesn't mean that I didn't want feedback or help in getting better, but mostly that sometimes when I asked for help, I wasn't given any.

THEN, I began to work at a school where they were very supportive of the teachers.  I wasn't told to figure out things for myself, and if something happened, I was told about it as soon as possible, rather than weeks/months/years later.  But, still, every time someone comes to me and says, "We need to meet," I get anxious about it.  I spent so much of my life thinking about what I had done wrong and how I was going to be "punished" for it, that I have little faith in those around me.  I am slowly trying to work out that scar tissue and heal the mistrust and lack of help that marked my past (at a school which is supposed to HELP people with Asperger's learn to get by in the world, but yet they weren't willing to help me  because, as an adult, I "...should already KNOW how to do things" - figure THAT ONE out!).

I like to think of myself as not being an anxious person, but I am human.  Anxiety and stress are part of the life of every person.  What we can control is how much that anxiety controls our lives and what we do.  I try not to let it control my life, but every once in a while, it shows up and can halt my normal functioning.  In these instances, I need to learn (and the learning curve is steep!) to not let it get to me.

So, I started this post this morning, when I had gotten my notice of a meeting, and one that was important at that.  But, it all turned out for the best, and I feel that this person was really out to help me become a better teacher, not, like others in the past, to punish me for some sort of transgression.  My anxiety got in the way, for about 18 hours between the e-mail and my meeting, but I powered through it and now feel like I have people looking out for me, which is a wonderful feeling - one which I haven't had in a long, LONG time!

Until next time!

Dave

"A Robot without Emotion"

I haven't written in a while, over two months, and, other than keeping myself busy at work, I can't think of WHY I haven't written.  I have really wanted to sit down and write a few times, but usually let myself get caught up in something else and the urge to blog went away again.  It's probably due to the fact that if I'm upset, writing helps me to process my feelings, and, having (self-diagnosed) alexithymia, in addition to my Asperger's,  I have difficulty interpreting my own emotions.  Time also accomplishes this same goal, and I think that in the past couple of months, I was able to process my feelings when I was upset by withdrawing into myself and figuring out what had upset me so that I could logically deal with it.  It's similar to how Mr. Spock (and all Vulcans) deal with emotion by internalizing and allowing themselves time to logically process it. So, I haven't had to write to get out my feelings in a while.

However, I am back to my blog this time.  Something happened recently that really got to me.  I withdrew into myself and tried to process it, and was able to do it.  But, unlike other times, instead of the processing helping me to get over it, it resulted in my becoming more upset.  I am not able to process this logically to resolve it for myself, primarily due to the fact that it lies, not within myself, but in how someone else sees me, which is something I cannot change.  Normally, I would not give two hoots about what someone thinks about me.  Even my closest friends, if they don't like something I did or how I am acting, I would have no difficulty telling them to go to Hell.  Once again, this time it was different - this person's impression of me REALLY MATTERED, and I can't let it go!

As someone with Asperger's Syndrome, I am used to people misinterpreting the fact that Aspies just have trouble expressing emotion in the same way that neurotypicals do.  This often results in NTs thinking that Aspies, and others on the spectrum, don't actually have emotions.  I am used to explaining to them this misconception, as well as my theory that our emotional response to things is either full on (meltdown) or full off (no visible response at all), rarely in between.  However, this person was upset one day and insisted on talking to me on my cell phone while I was driving.  I patiently listened to them while they were ranting, letting them get it all out, while I was trying to navigate through the rush hour Hartford traffic.  When they began to calm down and paused, I suggested that they call their therapist, since there was nothing I could do to help, especially since I was currently driving and didn't wish a ticket (or worse!).

Now, THIS is where it got to me.  This person blew up all over again, claiming that they needed to talk to someone, and that our relationship meant that person was me.  Also they said that their therapist was not there for them just ANY OLD TIME, but only when they had an appointment, and they weren't going to bother their therapist for something that they should be able to talk to me about.  "Plus," they said, "it's not my fault that you are a robot with no emotion!  You're supposed to be there for me, not pawning me off on someone else since you can't deal with my emotion!"  After about five minutes of this, with both of us yelling back & forth, we finally got off the phone.

Now, this really bothered me.  Here I was, driving through nasty traffic, and this person needed to vent to get something off their chest.  So, they let it all out on me, without any interference from me - all I did was listen.  Then, when I tried to suggest something else that might further help them deal with the issue, they got even more upset, hitting me with my Asperger's.  Now, I have been close to this person for 20 years, and they know about my quirks, including my Asperger's.  But to use my AS to attack me because they were upset was completely uncalled for.  Also, this isn't the first time this has happened.  I have often tried to explain to this person that I actually have emotions, but have difficulty expressing them.  After twenty years of knowing this person, the last fifteen intimately, they still don't get me, no matter how much I try to explain it to them.  I care about this person greatly, and my sole reason for existing the past 15 years was to make sure they were happy.  They haven't been happy for years, and no matter what I have done, this person still can't see the good things in their life.

For the last 12 years, I have been there for this person.  I have dealt with my own depression, my own Asperger's and my own social issues, and tried to keep my family afloat financially and emotionally.  Yet, this person can't see everything that has been done for them.  All they see is what has gone wrong and how their life is not the way they want it to be.  For 15 years, I have been there absorbing all their grief and anxiety in the hopes that they might see the good things in their life, but to no avail.  I even have the feeling that my alexithymia got more developed as a defense mechanism so that I could deal with the stress of two people instead of just myself.  If anything, I have become a "Robot Without Emotion" so that I could take on the emotion of two people without it tearing me apart.  Unfortunately, it has taken its toll on me over 15 years, as well as the others who have to deal with this person.

Now, I am sitting here, and I know I have to do something.  Having the stress of two people to deal with will slowly drag me back into a depressive state, and that is not something I can deal with.  I have the feeling that if I go back there, that I might not return from it.  Plus, I have few people to talk to about it, and even those that I DO have, I can't talk to on a regular basis.  The only things I can do will just cause more stress for those that I care for and isolate me from them.  Yet, I need to keep pushing forward, living day to day and trying to get by the best I can.

Until next time.

Dave

"What’s wrong with you?!"

Alexithymia is defined as the "...inability to identify and describe emotions in the self." (see http://en.wikipedia.org/wiki/Alexithymia) for a brief overview on the condition. Many people with Aspergers Syndrome are described as lacking empathy and lacking feeling, including myself, but this is, as I have said before, rarely the case. The feelings are there, we just have trouble associating these emotions to others and identifying them in others. Also, those with Aspergers often have emotions, we just have difficulty relating to them when others express them. In the words of the immortal Mr. Spock, "They are just not logical."

I have wondered, however, if my own difficulties with emotions is because of my Aspergers, which is very mild according to my "supports" and my family, or due to the co-morbid existence of Alexithymia. I often do not recognize emotions in others except through explicit signs (crying, sniffling, explicitly telling me, etc.). Also, I have difficulty identifying, in myself, when I am experiencing an emotion, much less identifying which emotion I am experiencing. In fact, I never used to understand emotions at all, and until my Aspergers' diagnosis 2.5 years ago, I just described myself as, "not having any emotions at all."

Yet, something happened this morning that really made me consider what was really going on with me. Is my apparent lack of emotion, and inability to control emotions due to my Aspergers Syndrome or an undiagnosed case of Alexithymia? This morning, I heard of the passing of someone dear to a number of people whom I am close to. This person, whom many people in the room had known for many years, was one of the kindest, most sincere, caring, TRUE people that I have met in my entire life. I only had known them for a year, but many of those in the room had known this person for upwards of 20 years. There was, of course, a lot of sadness in the room. Yet, I was only able to identify this emotion due to the auditory and visual clues of those around me. I felt no emotional response to this news, despite the fact that I had known this person. My only response was to close my eyes and do some deep breathing. Later, I spoke to someone to verify that this was (1) an appropriate response to this news and (2) that I was not just some sort of monster.

This was a lot like other times in my life when people close to me passed away. My grandfathers passed away when I was 9 and 29. When the second one passed away, everyone at the school I was teaching at expressed their sympathy, but I could not identify exactly what I was feeling. It took my wife and my co-workers pointing out that I was walking around in a fog, and seemed "out of it" for three weeks before I recognized that something was wrong, but I still could not identify that it was sadness. I suffer from depression - it took me a long time to identify something was wrong, but it was my actions rather than my feelings that told me there was a problem. I thought, though, the fatigue was because of a physical illness, not emotional. In college, I broke up with a girlfriend and spent hours convincing her it was OK, having no emotional response to the charged situation - that is until I woke up crying at 3:00 AM, not knowing that I was upset about it until then.

So, in looking into it, I have realized that I am both an Aspie and Alexithymic, however both of these conditions are, as far as I can tell, mild. My Aspergers is mild enough that it is difficult to notice it unless I am stressed out. My Alexithymia is, in my opinion, mild, since I do not exhibit at least one of the symptoms of it:

1. difficulty identifying feelings and distinguishing between feelings and the bodily sensations of emotional arousal
2. difficulty describing feelings to other people
3. constricted imaginal processes, as evidenced by a scarcity of fantasies
4. a stimulus-bound, externally oriented cognitive style.

I fit into categories 1, 2, and 4, but not 3. People have told me that I am creative and imaginative. This is partly because, due to my Aspergers, I can see the world differently than other people. This unique perspective gives me ideas that others might not have thought of. However, I rarely fantasize about things. I am a realist, a real-world Mr. Spock.

On the other hand, I DO have emotions, I just have difficulty recognizing them. And, whether is it neurological, like my Aspergers, or psychological due to holding down my extreme emotions, I don't know. Plus, as my friend said when I spoke with her, this is just "...part of who (I am), and that's OK." I never really had responses to things like this, and I should look at this as allowing me to "...steady the ship in times of turbulence." Sometimes, it makes me feel like an anchor making it even more unbalanced and, on occasion, "swamping the canoe," but I think I need to look on the bright side of things.

So, I will take this time to reflect on my issues and try to make lemonade out of the lemons of my life, Alexithymia and all!

It’s the Little Things

You know, it's the littlest things that often affect us the most. Kind of like in War of the Worlds where the germs kill off the Martians that mankind can't even hurt! Recently, I went to an audiologist for a hearing test. I've had tinnitus for years, a result of listening too loudly to my music while mowing the lawn as a teen, and I'd noticed that I'd been having difficulty hearing people adequately. At least, that's what my wife said - I'm not sure it wasn't selective hearing :-) However, I did hear an increase in the "volume" of the tinnitus. My first visit to the audiologist back in March, I was unable to get the hearing test done due to blocked ears. 'Maybe that's why I'm having difficulty hearing,' I thought. Well, I got my ears cleaned out, and found no change in my hearing. So, I went back in July to the audiologist and found out that my hearing was degrading in both ears at higher frequencies. This was, in my left ear, at the borders of acceptable hearing, although a little more decline and I would "officially" have a hearing loss in that ear. In my right ear, I "officially" had mild sensoneural hearing loss at higher frequencies.

In discussing the results with the doctor, she asked about the results. Some people have mild hearing loss, like I do, and it really bothers them. I seem to fit into this category. Others have such severe hearing loss that, in her words, "...it's amazing they don't seem to notice it." In my case, how is my mild hearing loss in one ear and borderline loss in the other ear affecting me? Well, first and foremost, I have trouble hearing people. This results in my not responding on occasion when people speak to me, especially if I am not looking at them. Additionally, if the speaker is female, or a child, their voices tend to be in higher registers, therefore I am less likely to hear them (hence the supposed 'selective hearing' of my wife). This then causes some people to get upset at me, thinking I am ignoring them (like my wife), causing tempers to flair and (with my difficulty controlling my own emotions) on the rare occasion, causing a blowup.

So, WHY is a MILD hearing loss affecting me so severely? Well, it turns out that this is probably a result of my Aspergers Syndrome. Discussing my AS with the audiologist, she hypothesized that with my AS, it takes me a little time to process things that people say to me, especially with my social skills issues (lack of Theory of Mind). This delay was not noticeable when I was younger, since I heard them fine, and so even with the processing delay, no one, not even me, noticed that it took me a millisecond or two longer to respond appropriately. However, now it takes me time for my brain to decipher what it heard. Added to the processing delay, there is now a noticeable delay in responding appropriately, causing me to (subconsciously) get upset (as well as other people) with my inability to react to people.

In thinking about this, it also explains a couple of other issues my wife has noticed. She has told me that I have changed since we've met. First, I used to socialize more when we first met and got married. Now, she says I don't socialize as much, and when I go with the family to parties and get-togethers, I often "go hide," in her words. I think that this is true, but now I think that my frustration with hearing people causes me to avoid that large group interaction more than when I was younger. Being in a group of people, not only is it more difficult to hear someone who is interacting with me, but the extraneous discussion and music around me causes even more delay in processing what I've heard! So, subconsciously, I've grown to dislike larger gatherings, and even avoid them.

Also, my wife says that she has to explain herself to me much more frequently than she used to. This frustrates her to no end. I used to just understand what she was asking, in fact, we used to complete each other's sentences. Now that I think about it, if I am having difficulty hearing and processing what she is saying to me, I tend to repeat what is being said in the form of a question (you know, kind of like Jeopardy "So, I need to do this, right?").

So, despite my knowledge of Aspergers from both having it and working with students who have it for 11 years, I am still learning about how it affects adults, and myself in particular. The affects of aging of those with Aspergers, especially those in whom it was not diagnosed in childhood since they were high-functioning enough in school for it to not affect their education (hence the IDEA law did not affect them) seems to be exponentially difficult, creating mountains out of what seem to be anthills. In me, this can be seen in my mild hearing loss and its affects on my social and family life.

This is also an effect of our societal avoidance of differences. If I had not noticed the change in my hearing, I would not have recognized the cause for a number of my issues. Yet, we as a society, tend to avoid being labelled as "abnormal," and try to avoid seeking diagnoses. Both my Aspergers and hearing loss are aspects of my health that are making me who I am and causing me to change how I am perceived by others. By getting these diagnoses, I am on my way to being more accepted, and understood, rather than just being labelled as a "Grumpy Old Man" and a "Hermit-Loner."

Until next time - Dave

Finding Myself

Being an Aspie, I find that I have some major strengths.  I often see the world through a unique lens and, as a result, I can come up with very creative, off-the-wall solutions to problems.  It can also help in my teaching.  I am able to merge multiple subjects in my teaching, even ones that don't seem to go together really well.  I have taught classes in geoarchaeology, scientific paranormal research, and all kinds of weird and wonderful topics.
I also have a number of weak areas being on the autism spectrum.  When put into a social situation, I am like a fish with a bicycle.   I have trouble with emotion - I have difficulty identifying my own emotions (it's called Alexithymia) - when someone I am close to (i.e. a friend or family member) is upset, I REALLY can't deal with it!  Luckily for me, I don't exhibit the Aspie meltdowns - the going from 0 to 10 with an inability to calm oneself down.  I spent much of my childhood and adolescence trying to learn those calming techniques and, as a result, I don't really "meltdown" anymore.  So, despite all of my flaws and weaknesses, I have some pretty unique strengths.
However, recently, I have been seeing the world through a half-empty glass.  For much of the past decade, I have struggled with depression which, in turn, has caused me to have a negative outlook on humanity, and life in general.  I lost sight of a lot of what I cared about, and started seeing what was wrong with my life.  I would get up in the morning and think, "What's the point?" and not be able to come up with an answer.
Then, about six years ago, I realized that I had lost my love for life, and what had mattered to me in the past had slipped from my daily view.  So, I sought out help.  With the help of a friend, I found a counselor who could help me think out things when my stress was high (which it seemed to be perpetually).  Slowly, over time, he helped me find myself and reprioritize my life.  I realized that I was getting up every day to teach at a school where the mission of the school was to change kids with Asperger's and NLD into more "normal" kids.  They also went from caring about their faculty to caring about the bottom line - $$.  So, I began to put my family and my mental health FIRST, and my job second.
Changing my priorities was an important step in finding myself in the morass of negativity and despair that I had been enveloped by.  Little by little, I began to see the light above the fog that surrounded me, but I still was unable to get out of it.  My wife (who has finally begun counseling - YAY!) was anxious about my job.  What if putting my family and mental health first caused me to lose my job?  How would we survive if I wasn't working?  I absorbed that anxiety coming off of her, and turned it into more stress, which caused more bad decisions.  I ended up up staying in that job for four more years before coming to the mutual decision that the job was no longer a good fit for me.  Despite hating to leave the students who, I found out with my diagnosis during my last year there, were just like me, I knew it was the right thing to do.
Here I am, two years later, and I am still peeling off layers of grime that have obscured the real me from the world.  This grime, the result of working eight years in a school which can't see the unique strengths that kids with Asperger's and NLD have and instead have tried to use layers of makeup to change who they are and make them more like everyone else, is still affecting me two years later.  I still occasionally go into downswings where I see the world as half-empty (or, sometimes, with a leak in it that causes it to be losing water), but they rarely last as long as they used to.  However, each time I come out of a downswing, peeling off a little more of that grime, I get a little better and the coating of grime gets thinner.  I have realized that I have a wonderful family that cares for me (no matter how much they sometimes drive me NUTS!), a job at a school where I am appreciated, rather than viewed as just another "warm body to monitor the students" (an actual quote from one of the learning specialists…).  I am special, and I DO matter just as I am, despite what the administration at my old school tried to get me to believe...
Not only that, I have also rediscovered a goal of mine - I want to make the world a better place.  I want to help others find themselves, especially those who, like me, have Asperger's or Autism and have trouble figuring out how they fit in with the rest of the world.  I want them to realize that, no matter how different they are, no matter what difficulties they may face, there is a spot for them in this jigsaw puzzle called life.  They just need to learn to be themselves, and not who others want them to be.  As Jim Henson said, (from The Muppet Movie)

"Life's like a movie,

Write your own ending,

Keep believing,

Keep pretending.

We need to never lose sight of who we are and what we want to do in life.  Keep believing in ourselves, and we will accomplish great things.

Learning to Read the Minds of Others

One of the notable issues that those with Asperger's and Autism have is a lack of "Theory of Mind."  Theory of Mind (ToM) is the ability to know what others are thinking or feeling.  Most people have this innate ability to understand the others around them, and often can think or feel exactly what others around them are thinking and feeling as if they, themselves, were in the same position.  Those with Asperger's and Autism have no ToM (according to the experts), and cannot understand what other people are thinking or feeling.  This stems from their inability to read facial expressions and non-verbal cues.

However, this is a very simplistic explanation.  There is really a spectrum of ToM, ranging from having no idea what others are going through (i.e. their thoughts and feelings are what everyone else is thinking and feeling - the universe is this individual and no one else has their own thoughts or feelings), which would correlate to those on the lowest-functioning end of the spectrum, to being completely in the place of the other individual and not only having the thoughts and feelings they are having, but even, in some cases, experiencing any physical effects of those feelings and emotions (i.e. being a telepath or empath).  Most neurotypicals are towards this end of the spectrum, but don't actually go into the realm of telepath/empath.  Most high-functioning Autistics and Aspies are towards the middle of this spectrum.  They often cannot feel what others are feeling or think the thoughts they are thinking, but instead they can logically reason out what others are thinking or feeling.  For an analogy, watch this video:

Now, for those of you out there who are guys, how many of you had some kind of physical or mental reaction?  That is ToM at work - you could actually feel (or recall) what that was like for that young man.  For those of you who never got kicked in the nuts (a vulgar slang term, but it works), you may have felt some kind of pain or emotional reaction to it.  I, however, had very little reaction to it.  Not because I haven't felt that pain before, but because I have difficulty experiencing things that are not done specifically to me.  However, I am able to understand the pain and humiliation that young man felt (probably more of the former) since I am able to reason out what went through his mind.  

Now, imagine being in a group of people where you are unable to imagine what they are thinking or feeling without being told directly.  People tell you things, and you have difficulty determining if they are being sarcastic or truthful, joking around with you or really pissed off over something you did.  And you cannot use ToM to fall back on, thinking "If I was in their position, I would feel..." because you never were in that exact position as that person.  THIS is what having Asperger's and Autism is like.  Many people will say that Aspies lack empathy, but this isn't quite true (we CAN recognize the emotions others are feeling since we often reason it out).  Others will say that we don't express emotion, but this isn't quite true either (some of us may have Alexithymia, or an inability to recognize and describe emotions in ourselves, but, we ARE human, after all, and DO experience emotions, but it is often much different in intensity and manifestation that neurotypicals, but that is for a different post, altogether...).  For as long as I can remember, I have been in that situation.  Every day, I experience a world of people around me who seem to have some sort of telepathy with each other, but yet my mind is shielded from theirs by my Asperger's.  I often realize that so-and-so must be upset, but cannot, for the life of me, realize WHY, nor how to make it right.  People I care about have more in common with the stranger passing by than with me.

But, this is who I am.  As a result of my Asperger's, I have spent much of my life trying to understand the people around me and what makes them tick.  I have had epiphanies into the minds of others that have made me who I am, a loving husband and father, a beloved teacher and learning specialist who GETS the students he teaches, an author, and a paranormal investigator.  I have a knack for being able to amaze both friends who know me well and strangers who have just met me just by talking to them (of course, I am more comfortable talking with a stranger than someone I've known for years, according to my wife, but I think that's because they are a new mind to learn about, someone new who hasn't heard me drone on about my special interest for hours on end...).  I am an adult on the spectrum, and, despite all my difficulties and social weaknesses, I am special because of it, something I would not be if I was neurotypical.

Education of an Aspie Teacher

As most of you reading already know, I was diagnosed with Asperger's Syndrome 2 1/2 years ago.  At the time, the diagnosis was not unexpected, as I had been working for 7 1/2 years at a school for students with Asperger's Syndrome and Non-verbal Learning Differences, a Learning Difference in which students seem to learn well using similar methods to those with Asperger's Syndrome (or so the higher ups at the school said - I found that, despite having difficulty with social skills and reading others, Aspies tend to be more visual learners and NLD students are more auditory learners, and hence have very different learning styles...).  My wife and I, along with many students and parents, had noticed how similar I was to the kids at the school (I was even mistaken for a student by many a parent on opening days at the school!).  I had been told by one administrator that, out of all the faculty, I understood the students and their abilities the best.  Parents, when I was allowed to talk to them (the school only allowed teaching team leaders to talk to parents - NEVER  classroom teachers, "To protect us from overbearing parents," they often said - I think it was to control the message coming from the school...), often sought me out whenever they were on campus to tell me how much they appreciated my working with their child, and how well I seemed to understand them.  Other teachers often asked to co-teach classes with me, one of whom told me was because I "...(was) so good with the kids and (the teacher) learn(ed) so much working with me."  One of the things that was told to many of the students at the school was, "Once you graduate from college, we'd LOVE to have you come teach for us!"  You'd think that my diagnosis of Asperger's Syndrome would have been a benefit for the school, right?  WRONG!

Unfortunately, there are a number of weaknesses that go along with Asperger's Syndrome.  One of these is that our brains our wired differently than a majority of the human population's, causing us to think VERY differently than those around us.  Thus, as much as my Asperger's diagnosis allowed me to understand the students at the school, it caused some strife with some of the decision makers around me.  One of those who had difficulty understanding me was one of my teaching team leaders, who was my direct supervisor for my last two years at the school.  She was the Learning Specialist on the team, and thus was educated in special education.  You would think that she would have appreciated me, possibly even noticing my Asperger's Syndrome, right?  Wrong!  As much as I understood the students at the school, that's how much she just DIDN'T get Asperger's Syndrome, especially in adults.  Her goal while she was my direct supervisor seemed to be to try and force me to do things in some standard way.  Everything I did was wrong for my last two years at the school, if you listened to her.  Despite the fact that I was able to meet all the goals set at the beginning of the year for me, since I didn't teach the kids and the classes in her way, I was wrong.  It got even worse once I was diagnosed with Asperger's Syndrome and asked for reasonable accommodations under the ADA to be able to do my job.  She refused to allow me to have ANY of the suggested accommodations from my psychologist.  What was especially ironic about this was that many of these were the VERY SAME accommodations that I, and every other teacher at the school, were teaching the students to use and, in some cases, FORCING them to use!  When I asked why it was required for us to teach these accommodations to students with Asperger's, but I was not allowed to use them, I was told that, "As an adult and professional teacher, you are EXPECTED to be able to do things on your own without any assistance."  What was especially frustrating was that this learning specialist refused to give me a list of policies and procedures, notes of meetings (which I ALSO was told I could not record due to privacy issues...), or even written deadlines for work that I needed to do.  (NOTE: This still makes no sense to me - why NOT have written policies and procedures or deadlines, unless you just want to be able to change your mind and not be held accountable for what you said - if it was in writing, it would be harder to renege...).

Another person who had issues with me was the headmaster.  This man, when the school opened in 2003, had said that he wanted the school to be a joint effort between everyone, administrators, faculty and staff, and that he welcomed differing opinions.  However, if you questioned his opinion, you were not long for employment at the school.  Early on in his time there, I ended up on his "hit list" by questioning why my family was being moved off campus from our on-campus home (I was told that housing was NOT  the concern of the faculty, despite it being provided by the school, and that I just needed to accept that it was best for the school, even if it inconvenienced my family; needless to say, I was NOT pleased, but moved anyway).  My way of thinking often put me at odds with this man - I always needed to understand why something was happening, he was the type of person who expected people to jump when he said "JUMP!"  Even asking "How high?" was too much!  He also had difficulty accepting my diagnosis, going so far as to deny that my diagnosis was real.  When presented with the letter about my diagnosis and suggested accommodations, he was FURIOUS!  Here he was, trying to insist that I was trying to be subversive and destroy the school, and I was, once again, contradicting him.  So, he responded in a VERY unprofessional, and illegal, manner.  "I have worked with students with Asperger's for TEN years (it was really 8 at the time - just like me), and I KNOW what they are like, and you do NOT have Asperger's!  I don't care WHO wrote that letter, he is WRONG!  You are just DISRESPECTFUL and REFUSE to follow ORDERS!"  Now, as an employer, he is bound by law (the ADA - Americans with Disabilities Act) to give reasonable accommodations to those with official diagnoses so they can effectively do their job.  Not only did he REFUSE to give me the recommended accommodations, but HE made a diagnosis of me without being licensed by the state, ignoring the diagnosis of the licensed psychologist.  He showed complete disregard for both the law as well as the student he was supposed to be supporting at the school. 

So, my experience at this school taught me a few things.  First and foremost, I realized that being an adult with Asperger's Syndrome, I am expected by many people to be able to act and behave as if I am normal.  There is a gulf between children with Asperger's Syndrome and adults with Asperger's Syndrome.  Adults, especially those who receive their diagnosis in adulthood, often have difficulty in everyday life, but are not eligible for many of the supports that younger kids are.  This is due to laws like IDEA, where kids are supported until they turn 18, but then are cut loose to survive on their own.  If we are to survive as a nation, we need to not only focus on the children out there, but we need to consider the adults.  This goes for Mental Health issues as well as Asperger's.  In fact, some of the strategies we develop to use with adults on the spectrum would probably work with ANYONE!  We need to help others regardless of age.

The second thing I learned is the cause of the high unemployment among those on the Autism Spectrum.  Most of this has to do with the employers out there.  First is the stigma that surrounds mental illness and mental differences.  Aspies, for example, often have deficits in social skills, reading facial expressions, being literal, etc.  These are qualities that many employers, as well as people in general, highly value.  These deficits are why the learning specialist and headmaster viewed me as a liability to the school.  They were unable to see the benefits that I brought to the table.  An Aspie, despite having some social skills issues, often is able to do things in a unique and creative way.  S/He sees the world differently from most of those around him/her and, as a result, is able to see different way to solve problems and achieve goals that others might not have seen.  Seeing the strengths in others that can be cultivated, rather than the weaknesses that need to be fixed, is the way my current school sees everyone - as an individual with unique talents. 

Hopefully, someday in the future, others will be able to learn what I have found out.  Maybe a day will come when adults on the spectrum will be as well supported in their jobs as children are in their schools.  Maybe a day will come when those with Asperger's can tell a potential employer of their AS, and get the job because of what they can bring to it rather than lose out on it because they may need accommodations.  On this day, our nation will have reason to rejoice, for we will all be one nation, united.

Are Autism and Asperger's Syndrome REALLY Disorders or Disabilities?

This is a question that I have been mulling over for a long, long time.  Well, if you're reading this blog, then you probably know that I have been diagnosed with Asperger's Syndrome.  Because of this, you can probably guess that my answer will be, "No."  However, unlike a lot of my co-Aspies, I don't see this question as a cut and dried Yes/No, but I see it more in terms of a combination of the two, depending on the situation one finds oneself in.  Le me explain...

I have been diagnosed with mild to moderate Asperger's Syndrome.  As the psychologist was going through the testing procedure with me, he explained that the criteria for Asperger's hinged on whether or not it affected the individual's work, home or school life significantly.  "This," he said to me, "is one of the problems with personal diagnosis of mental disorders.  It is completely based on their behaviors, not on and physical or genetic markers that can be measured."  And, because of this, a person can see one clinician who can diagnose the patient with a mental disorder since he/she views the patient's behaviors as having a significant impact on their life, and another clinician can say that, even if the behaviors are impacting the patient's life, that the impact is not significant.  Additionally, it is also based on the outward manifestation of the condition through the patient's behaviors.  For example, when I was diagnosed, I was in a job that, although I loved teaching the population of students I was working with, I was questioning the direction that the school was going (where the policy was to try to fit students with Asperger's and NLD into a more traditional student mold, rather than helping them learn to use their unique perspectives of the world around them to make their own place in the world, kind of like trying to fit a really square peg into a round hole by shaving the corners off).

The continual stress of ending my work with this unique student population that I really felt comfortable working with (and, I later found out with my diagnosis, for good reason!),  was causing my lack of social skills and poor personal relationship skills to become very apparent.  I even got into a couple of arguments with the headmaster about policies, which eventually caused him to try and make the environment a caustic one to work in and force me to leave.  So, at the time of my diagnosis, my Aspie traits were very apparent, and they caused enormous difficulties in my employment, as well as at home (since I was always stressed from work, and the 60-80 hours a week working for a boarding school, it wreaked havoc with my family life as well).

Now, I am in a job where I feel appreciated.  I am at a school in which my Aspie traits help students to be comfortable working with me one-on-one in the Learning Skills Program.  The school, unlike my other school, also doesn't try to force students into a single student mold, but instead allows each student to learn to use his or her strengths to learn about the world around them, and eventually give them the power to shape it for the better.  The school's philosophy is more like mine, and I feel comfortable in the environment.  My Aspie traits, although they are still a part of who I am and show up on a regular basis, do not have a negative effect on my life at work.  If I was to undergo my diagnosis today, I might not be diagnosable...

And THAT is why any of these disorders aren't really disorders or disabilities in the truest sense of the words.  Humans have a wide diversity in their genetic code, and millions of years of natural selection which have brought us to where we are today.  If Asperger's or Autism were detrimental to us as a species, natural selection would have weeded it out long ago.  But, the fact is, IT DID NOT.  Aspies are still in our population.  In fact, it has been proposed that many of the most unique thinkers of our recent centuries were undiagnosed Aspies.  Names like Einstein, Mark Twain, Isaac Newton and HP Lovecraft, to name a few (check this link to see people who have been diagnosed or others speculate may have had Asperger's) have been tossed about, and, since Asperger's and Autism were not identified until the 1940s, it is probable that at least a few of them did have something like it...

You see, disorders are only identified by those who do not identify as having the disorder.  A disability is something which prevents someone from being able to survive in the regular world due to the disability.  My Asperger's is not a disorder for me, it is a difference, since it just means I think differently than most other people.  The order in my thinking is not missing, it is jut not the same as in others.  It is not a disability, it is a difference in my abilities.  I perceive the world in a different way than others do, and it makes me unique. 

We need to take a look at society's view of mental health, and reassess how we view it.  There is a negative stigma to the words we use to describe mental health (disorder, disability, mental illness, etc.), and this creates the perception that if I have one of these disorders, then I am not normal, and it is something to avoid.  However, we need to stay mentally healthy just like we need to stay physically healthy, but we avoid checking our mental health because we're afraid of finding out that we're not normal, that we're disordered or disabled.  Insurance companies pay for our physicals, but not our mental health checkups.  THIS is the view we need to change, the idea that mental health is not as important as physical health.  We need to see it as MORE important, since it is usually hidden from view, and, therefore, more important to get help for when it begins to deteriorate.

So, we need to STOP labeling things like Asperger's and Autism as disorders and disabilities.  We need to take a different view of mental health, one which is beneficial to the human race as a whole, one which will help people become mentally fit as well as physically fit.

GMO Labeling - is it a good idea?

The CT legislature recently passed a bill requiring labeling of foods with ingredients coming from genetically modified organisms, or GMOs.  Being the first state in the nation to do so, some of our political leaders had reservations about such labeling, concerned that the additional costs associated with it would be either passed on to consumers or have the major companies not even offer these products for sale in the state.  So, the bill that was passed by the CT House included a "trigger" which requires a number of states around CT to also require labeling of GMOs.  This has created an uproar in both anti-GMO groups as well as the CT Senate, saying that the trigger makes it impossible for this labeling to occur.

As a science teacher, I have taught a number of politically and publicly charged topics, such as Global Warming, Diversity Loss, the Ozone Hole, and, now, GMOs.  When I ask my students about GMOs, they often start off very against them.  However, as I ask them questions about the research done in the past decade on GMOs, and their effect on human health in the long and short term, they begin to see how science works.  So far, there has been only one study done which has shown that GMOs could cause health problems.  This study was done on experimental rats where they were fed exclusively GMO corn for 2 years.  This corn was modified to be resistant to Roundup, a weed-killing chemical made by Monsanto.  Pretty damning, huh?

Well, when the experiment is broken down, a number of problems appear.  First, most experiments with this type of rat only goes 90-180 days.  This is because their lifespan is about 2 years, and towards the end of their lives, they have a high incidence of tumors.  A number of scientists have pointed out these, and other flaws in the experiment, and when they are taken into account, the rate of tumor development in the GMO and non-GMO rats was not significantly different.  Also, the researcher who carried out the experiment has been a vocal opponent of GMOs for years,putting further doubt into his results due to potential bias.

So far, there has been no scientific proof of GMOs being detrimental to the health of humans.  Yet many people keep yelling that they do not wish to have these ingredients in their foods, and that we have a right to know what we're eating.  Unfortunately, they are acting on emotional, but not scientific, arguments.  If these groups get their way, the only thing that the residents of CT have to look up to are higher food prices and less choice at the market.  Add this to the high cost of living and poor economy in CT already, and you have a recipe for disaster.  I applaud Speaker Sharkey and Gov. Malloy for thinking of the people of the state (although our governor might not have our best interests at heart), for fixing a bad bill and making it more palatable and less likely to raise food prices.  I would have preferred if they had looked deeper into the science before passing any bill, but if they are to pass one, hopefully it will be the House version.