Freedom or Shackles?

Self-concept… Who do you think you are? What defines it? The activities you like to do? Or maybe it is a combination of your proclivities… tidy, trustworthy, fun, bubbly, blunt, good at conversation, careful, brash… It would have to include the things you are good at, right? I consider myself a good cook, but a rather poor athlete. So, do the things you don’t consider yourself good at make up part of your self concept? Most people think they are bad at math, maybe you are bad at confrontation, or drawing, maybe building things…

Why does it seem that the things we are bad or good at, are things we also consider to be things that we cannot change about ourselves?

It is like they are in-born, a pre-disposition, that we cannot or care not to change.

 

So, when a child gets a label… diagnosed with a disability, how does that affect their personality and self-concept. Do they take that and make it an unchangeable characteristic, or see it as a challenge to try to do those sorts of tasks that they are bad at differently using a skill they are good at?

 

Does a child who has dyslexia just simply think they are bad at reading, that they will always struggle with it? Sure, they could, especially if they see reading as just one huge, insurmountable, and frustrating task. It could keep them from trying new things and growing.

 

On the other hand… what if knowing that the child had dyslexia allowed him to approach reading differently… that with some determination and perseverance, the child became a novelist?

 

It is really best served by an example. Strictly speaking, I have a form of dyslexia, dyscalculia, and dysgraphia. (I know, intense!) The problem really it wasn’t that I have problems with all reading, writing, and arithmetic tasks, or that I can’t learn to do them at all.

 

In fact, it turns out that I simply learned to do math my own way, since math is really a wholly consistent system, I just took the proverbial scenic route.

 

Thing is, I never had a diagnosis as a child… but as I have mentioned before, I always knew something was wrong, and it created serious problems for me.

 

Since my diagnosis, a couple interesting things have happened. That label allowed me to honestly look at myself in a way I had never done before.

 

It has allowed me to let go of the things I simply can’t do… and in letting go, I can do them differently. It was never the task that was the problem… I can read just fine, but I have to do it slowly, and interact with it differently. I can write, but if I have to hand write I know I cannot compose well, hand me a computer and a good chunk of time, and I am far from disabled.

 

Now I have enough information to understand why I have challenges and how I can take the task on differently.

 

Thing is, I could have done none of the growing I have, in the last year without my diagnosis… I didn’t have a mirror, or a good idea of how typical it was for me to be doing tasks as I did. I also could not let go.

We are taught that we can do anything if we try hard enough… and finally being able to give myself permission to say, “I cannot try any harder without killing myself.” is something that changed my life. 

 

I had freedom to stop doing something without that meaning I was a bad person.

It also meant that all the failures I’ve experienced in the past, all the hurt I had to go through, it wasn’t my fault, it wasn’t a consequence of not trying hard enough.

 

I can see how having that excuse, would be a great temptation not to challenge yourself, or try new things… I can see how it can keep you from growing to your full potential.

 

I can see how having a new way of looking at yourself can allow you to flourish and grow in ways you could not without that label.

 

So, does labeling create restraints on a person or does it allow them to know themselves and thus grow?

 

I think the answer is not just yes or no, because I think it can do both.

I also think that assuming that depriving a person of their diagnosis, in fear of restraining their self-concept, prevents that person from being able to make this life their own.

 

Do you not tell a person they have a brain-tumor because it could change what they want to do with their life, that it might depress them? Is it fair to deprive them of their own decision to face (or flee) their own fate?

The Significance of Grief

Grief…

It may be a sad to may of you, but…

It is important.

What do I grieve for? …aside from the things that you might expect a 20 or 30 something might have on their plate. You know, school trauma, constant taunting, the impending permanence of not having my whole life in front of me,  abandoning my dad, knowing that I forgot to tell him that I loved him, when he last spoke to me… or the regret that I felt like I would not survive my dad’s decline into alcoholism if I didn’t pull away… a whole year before he died…that hurt really bad. Feeling the years of lost time slipping away through your fingers… now that I know… …all the things I could have done with that time…

 

But, I am dealing with it, I can’t change it, and I am learning to recognize that I may have saved myself… and maybe I gave up on many things, but I am still here.

 

So, knowing all of that, what needs to be aired, what is it that I still have left to grieve?

 

The whole, typical, normal damn person I could have been. That boring average person everyone thinks they hate about themselves… I long for it… I grieve for the fact that I have to convince myself that I deserve to seek out what I want, that I deserve friends, that I deserve to…

 

…to live my life.

 

Last summer one of my teachers, someone who I have come to respect and confide in, spoke in class about a woman who wrote about grief, about parents of children who have disabilities. He said, “What do these parents grieve for?'”

My heart… it ached… it broke, and I rose my hand and said, “The healthy baby they expected to have.”

NLD, Asperger’s, and OCD

 

How is Non-Verbal Learning Disorder different from Asperger’s?

 

If people with NLD tend to “rely on routines” and people with Asperger’s tend to have “rituals” aren’t these both really similar to Obsessive-Compulsive Disorder?

 

These are frequent questions I hear and read about, especially when a person first gets their NLD diagnosis. It was one of the first really challenging concepts I ran into as I was trying to comprehend. Unfortunately, there is so little information that a person without massive background in learning disabilities can actually comprehend that they appear almost in-differentiable.

 

To start, I’m not an expert, but I have spent time with people with Asperger’s and NLD (to the greatest extent possible, which is mostly chatting online and over Skype in video chat) and spent hours reflecting on my own situations, digging through my past and digesting as much information in academic journals as I can stomach. And as a basic disclaimer, I am talking in broad trends and generalizations, there are always individuals that don’t fit everything  just right.

 

When it comes down to it, as far as I can tell, people with Asperger's tend to have a physical self-stimulation behavior, called “stimming” by many which at times can certainly look like OCD. They also tend to have a very specific field of expertise the jargon is “restricted interests,” which can also look kind of like OCD. People with NLD can be prone to over-learning and routines as coping mechanisms, which can SEEM like OCD but are also not.

Actually, neither really has OCD by definition. If you break it down obsessions are things you are incapable of not thinking about and compulsions are things you have no ability to NOT do.

 

*Asperger’s*

People with Asperger’s will have rituals and routines (e.g. counting (anything), touching corners, my mom pulls her rings on and off her fingers). But these are not things that are really obsessions so that they cannot do other things, actually these small activities are typically soothing or calming.

 

Nor are they compulsions, most people with Asperger's are quite capable of controlling these activities, although they are frequently not conscious of them.

They also have an obsessive-like interest, usually in only one very very specific area (e.g. trains, cars, numbers). Many times, especially in kids, it almost seems like they are cataloging lists of information. Though you can't really call it a compulsion nor does it have any sort of routine or ritual about it.

 

*NLD*

On the other hand, people with NLD tend to use over-learning and routine as relatively effective coping mechanisms. This can look like OCD because they may get easily ruffled when routines get broken, but seldom does it lead to an out-right break down/tantrum (though people with NLD will get there with enough stress).

People tend to focus on describing how people with NLD tend to approach gaining competency as over-learning. In reality it is a poor way to describe how and why people with NLD need to learn in the first place. The over-learning idea makes it look like a person with NLD will just learn all they can about something in a rote way without really understanding what they are doing.

But really, since people with NLD have difficulty with reliable “gut feelings,” putting things together on an abstract or intuitive level, and are pretty bad at prediction, they usually need to understand something from the ground up to form a solid enough knowledge base to really work with an idea with any sort of competency.

So, they may fixate and, yes, obsess about ideas or subjects that interest or confuse them. Over-learning, however, is not typically a very specific topic that will be directed at memorizing as much as possible. It tends to be focused on a interest, need or problem the person is faced with.

 

 

 

Getting away from the overlaps with Obsessive-Compulsive Disorder, there is a VERY distinct difference in the social functioning of people with NLD and Asperger's. 

 

*Asperger’s*

People with Asperger's tend to feel that they are almost of a different species or are aliens. My friend with Asperger's was afraid he was a sociopath before he was diagnosed because he felt like he might be the only 'real' person in existence or as if other people were just things going through odd little motions.

 

Interestingly enough, the FIRST description of Asperger's by Dr. Asperger himself, described children with this disorder as being  "Autistic Sociopaths" (I don't remember where in the description he discussed something as to their much higher level of function from most people with Autism).

What I have noticed is that people with Asperger's seem to have a decent ability to CONSCIOUSLY LEARN social norms and function in them.  It is almost as if the emotional feedback needed to learn normal non-verbal communication doesn’t connect with everything else as it should.

 

*NLD*
On the other hand, a person with NLD, in the social arena, tends to come off as "clueless" "spacey" "slow" "immature" "inattentive". They often know that they are missing something but never quite know what. They feel the need to respond, but are not able to see or interpret the social cues contained in non-verbal behavior well enough.

 

They can improve by learning specific cues and rules, but typically will always have difficulty in real-time social situations because the deficit is in seeing and interpreting the vast amount information contained in all the signals and context that happens in a typical interaction.

I hope this can help people’s understanding, and, if I am lucky, stir up some discussion.

Invisible Disability: Is There a Normal?

 

From birth, I looked ‘normal’, sure there were exceptions, but all seemed things a ‘normal’ person might do or say, now and then. I was treated as a normal kid, but by second grade, I had learned a hate of myself so deep, I’m lucky to simply be alive today.

 

This post stems from a few recent conversations I have had with people about the relative definition of disability, and some articles I have read by people who think that disability is just an artificial construct that people use to exclude others.

 

Now, A generally accepted definition is that, a dysfunction or disability is something that seriously interferes with a person's ability to live a normal life. There are many philosophical discussions on the definition of normal and abnormal, and even on how much variation within normal is in fact normal.

For example, some people can walk without tripping or falling, some people can sprint miles, some people have prosthetic legs that work better than average, and some have difficulty navigating stairs, but others have legs so crippled that they are bound in a wheelchair forever. Can we say they are relatively normal when you are touring the Rocky Mountains?

 

Unfortunately, it seems that these discussions seem to minimize the basic meaning and needs of those who lie outside this ineffable ‘normal’.

The line may seem blurry, as in those who have clear skin and those who have acne; but what of those who have permanently disfigured faces, the kind that few have the ability NOT to stare at?

 

Maybe it would not matter to a person who is blind, but most of us are not blind.

I can only speak now for myself, and of my experiences as far as this idea of normalcy is concerned.

 

I spent my childhood failing, working hard, focusing, sacrificing hours to keep up, but it was no use.
I can remember the hours my Mom spent trying to get me to memorize spelling and math facts from flash cards.

I remember crying in shame as my Father tried his best to teach me about things that were important to him. From car and home maintenance to hiking and bowling to driving jeeps and sports cars to understanding how to smooth talk a sales person. I failed them all.

And no matter how I tried I could NEVER convince anyone that there was something wrong.

"Why would there be? Carrie is so smart when she wants to be."

There was always the assumption that I wasn't trying hard enough, that I wasn't paying attention, that I was failing on purpose. I have always felt like I failed the people who invested so much in me.

Really, if only I could put as much into my school as I did in reading... I would ace all my classes. By the time I was seven I remember the first stirrings of what would haunt me to this day;

"Maybe there ISN'T something wrong, you need attention so bad you made this all up, you are so screwed up you can't even decide to stop doing it anymore, you don't deserve anything!"

There may be many grays of normal, in fact, I have well above normal verbal abilities. In ways, this was the proverbial “nail in my coffin.” Once people saw me being ‘smart’ there was no excuse for when I was being flat-out moronic, other than assuming I was acting-out or not trying hard enough.

I need to have a way of telling the world that I don't work right, that something about my brain is broken, that I am doing my best and trying my hardest.

Because now, when I fail, and I do often, I can stop feeling selfish, and disgusting, as if I just am not trying hard enough. Now, I can ask for help, or let it go, or try something else.

With this ability to say I am NOT normal, I am not even a gray area around normal, I can finally start talking to those pieces of myself I have locked away, beaten, and starved for the last 23 years of my life.

 

For the first time in my life, I can hope that maybe I can forgive myself, and that I might someday feel like a whole person.

The Autism Spectrum

The placement of NLD (Nonverbal Learning Disorder) in the Autism Spectrum is frequently a controverted point, and I felt that I needed to get my opinion of the matter out on the table, before much more discussion of NLD takes place.

It seems to be a point of controversy which hinges on the basic question:
What is the purpose of diagnosis and categorization?

Feel free to disagree, but as far as I can tell the common consensus is:
To provide better accommodation and treatment to the individuals affected.

By extension, increased service, can be directly served through finding a common cause, which allows for more efficient treatment.

Thus, where groups of symptoms seems to deviate from similar treatment and accommodations AND where symptomology ceases to imply a common cause, the disorders become different.

Thus, the presence and broad use of Autism Spectrum, defeats the purpose of categorization in the first place. And, disorders which significantly deviate from the symptoms of Autism, while potentially informative in comparison of each other, should not be included within this label.


Characteristics of Autism Spectrum Disorders

Catch-All:
There is no single behavior that is always typical of autism and no behavior that would automatically exclude an individual child from a diagnosis of autism" National Research Council, 2001, p 11

Impaired Social Relationships
Difficulty in:
Perception of emotional state of others
Expressing emotions
Forming Attachments and relationships
Social gesture use (pointing things out to others, gesturing or nodding to others; gestures used lack social component)
Joint attention (in young children; adult and child use gestures and gaze to share attention with respect to objects or events)

Communication and Language Deficits
Typically have severe language delay
Presence of Echolalia - verbatim repetitions of things they hear in noncontextual speech without communicative purpose.
Concrete/Literal processing of verbal information

Restricted, repetitive, and stereoptyed patterns of behavior, interests and activities
repetitive behaviors - rocking, twirling, flapping, humming, visual fixation for hours, spinning objects, clicking pens etc. (the key is small repetitive activities which extend for hours to the point of obsession)



So here's a few problems - using these definitions, everyone and most ALL learning disabilities will fall into one or more of these requirements, and since the catch-all says that no behavior can exclude and no behavior is always typical, it is a pretty useless diagnosis to start with.

Generally, Autism will fit all 3 categories.

Asperger's is included because they have difficulty emotionally relating to others and they engage in repetitive behaviors described above. Aspies, though, have typically above average intelligence and no language delay.


Now, let's look at some other disorders:

Depression, Schizophrenia, Bipolar Disorder, OCD, Social phobias, Sociopathy -
All of these can happen in very young people (though it is not common overall, it may be more common than the incidence of Autism) All of these display a significant degree of social dysfunction in both social and linguistic communication, the majority will display repetitive behaviors and restricted interests with a difficulty understanding a larger picture.

Any Learning Disability -
Typically a disability present at birth. Most all learning disabilities create emotional distress, which can easily create difficulty with social function, and lead to many of the previously listed emotional disorders. Even from birth, a child with Dyslexia, for example, who doesn't process the sounds of words, can easily have a linguistic delay. And since Learning Disabilities are, by definition, a discrepancy in ability and achievement, individuals with LD's will tend to restrict their interests to those things they have strengths in, and will vehemently oppose or violently react to engaging in activities which are in their weaknesses especially if they are outside the expected routine.

So the question is where do you draw the line?

If the purpose of diagnosis is to provide accommodations and services - then defining all of the above would be best done through symptomology only. Since there is such significant variation, the treatments and accommodations for various Autism subtypes vary as widely as the symptoms, then grouping them together only serves to obscure the problems.

If the purpose of diagnosis is to illuminate a possible common causality then the catchall should not be present, and groupings should reflect the logic involved with including symptoms for example:

In Autism, frequently the severe delay in language is caused by the lack in emotional bonding to other individuals. In individuals who build an emotional bond with animals, they will start to pick up the language spoken around them.They tend to use phrases they hear without intent to communicate or apparent knowledge of their meaning. And the restricted activities would be logically caused by whatever difficulty they have in emotionally connecting to people.

In Aspergers, there is NO language delay, and since language development necessitates emotional connection (many peer reviewed studies back this one up), it can be assumed that the primary dysfunction of people with Aspergers is not through emotional connection. In examining the disorder, it seems that they have difficulty feeling social pressure, they can usually see and learn nonverbal communication, and intellectually recognize socially appropriate behavior, but it is not something that happens subconsciously. Aspies, along with Autistics (and MANY other disorders) engage in repetitive restricted behaviors. Many of which involve repetitive sensory stimulation.

The conclusion I draw between Autism and Aspergers is that Autism involves some lack of emotional connection to individuals and Aspergers involves a lack of emotional connection to group behavior.

NLD differs entirely from both.

NLD'ers will resist change in routine, but in the same way all people with dysfunctions (in general) will, because a change in routine brings the potential for unpredictable encounters with the more traumatic aspects of their life. NLD'ers typically have sensory integration issues, but seldom if EVER display repetitive sensory stimulation behaviors ('stimming' - this repetitive behavior calms and focuses the individual). As I can tell, this type of behavior is MUCH more likely to INCREASE stress, frustration, and dysfunction in an NLD'er.

NLD'ers have difficulty understanding social cues, and I find that this seems to directly relate to the inability to PERCEIVE social cues and facial expression - more akin to right hemisphere damage, than any difficulty in emotional connectivity. Often, if a social situation is explained sufficiently to an NLD'er they will distinctly feel the normal social pressures and have no difficulty emotionally identifying with individual and situational emotions.

NLD'ers tend to be hyper verbal because integrating meaning and emotions into a linguistic (auditory-motor process) expression, is far more accurate and useful, than integrating visual-spatial information (a VERY high demand on white-matter task) which may boarder impossible for lack of visual discrimination.

Additionally, lack of visual discrimination, and visual-spatial processing, is SELDOM seen in Autism, in fact, this tends to be a real strength for them.