Tuesday, January 5, 2010

What is Aspergers: My Perspective - Part 1

No, I haven't taken leave of my senses or decided to "reboot" the blog. It simply occurred to me that while my first post discussed the official criteria, I've never provided a summary of my opinions on the subject.

As usual, this post represents my opinion only (though probably more considered and more direct than usual). If you have conflicting beliefs about what causes, cures or constitutes aspergers, feel free to comment. I'll publish any responses which aren't "rude" or trolling regardless of how I feel on the subject.

A Genetic ASD
There's absolutely no doubt in my mind that aspergers is genetic. You can't "catch it" from someone and it doesn't appear simply due to differences in diet or exposure to certain metals. Similarly, aspergers does not arise from environmental factors such as upbringing, social status or geographic location. Aspergers transcends racial barriers as well as sexual politics.

It's clear that aspergers shares enough characteristics with classic autism, particularly "high functioning" autism, to be considered part of the "spectrum". In fact, the primary diagnostic difference between AS and HFA is simply that HFA includes language delays. Once those delays have been corrected with speech therapy or simply adulthood, there is really no difference. This is one of the main reason for folding aspergers into the all-encompassing ASD (Autism Spectrum Disorders) label.

It's a decision I mostly agree with except for the fact that there is a very significant difference between someone with HFA and someone with a far more serious form of autism. I have no issues with the join between AS and HFA. My concerns lie with the lack of separation between high and "low" funtioning autism. After all, what good is a label if you can't say "this person has X" and expect everyone to have a fairly good idea of the range of symptoms you're referring to.

A Difference
It's also clear that Aspergers, and by definition HFA, is a genetic "difference" rather than a "defect". After all, it's obvious that people with the condition can look after themselves as individuals just as well as their NT (Neurotypical) counterparts hence in those terms it's not a disability.

If a defect exists, then it's in the society in which we live. The majority of aspergers traits which are "disabilities" and require "support" in our society are only a problem because our society doesn't accept them. For example, an intolerance to loud noises is a disability in a crowded shopping centre but not on a farm. In closing small "general stores" and opening shopping centres, society has taken this trait and turned it into a disability.

It isn't New
Despite the rapid rise in numbers recently, Aspergers is not a "new" condition. It has been around for a very long time, perhaps since the dawn of humanity. In fact, one theory, which I don't personally support, suggests that Aspergers is a neanderthal trait, hence it only affects certain families (presumably those in which a neanderthal has married in... er... right...).

Although I don't believe that aspergers comes from neanderthal heritage, I do believe that it's a genetic mutation (a difference) which is similar to mutations in other species. Such a mutation would be subject to the normal laws of evolution and would have just as much chance of being passed onto future generations as other differences, such as eye colour. As with eye colour, there may be some situations one colour can provide an advantage over the other but ultimately, neither difference is superior.

Long time readers of this blog may remember a discussion about an adhd wilderbeast. In that instance, it was obvious that the animal was quite different to its peers but it served a necessary purpose nevertheless. Evolution has a way of creating these mutations when needed. In the case of the aspergers individual, it's clear that they are generally deeper thinkers than neurotypicals.

There are a few reasons for the rapid rise in the number of people being diagnosed with the condition but one of the most obvious of these is that it has only recently been recognised and made available as a label. Thus people who would have either been diagnosed with a non-specific condition (or simply ignored) are now receiving a diagnosis. There's more to it than that though. It's possible that the numbers really are rising. If that is the case, then it's down to the laws of evolution again. Perhaps our society with it's fractured nuclear family and focus on technology is actually becoming more conducive to people with aspergers. Perhaps in some way, society is helping aspergers to flourish.

Next Time
In part two, I'll look at some of the the common co-conditions of aspergers and how the symptoms are defining the label - instead of the other way around. Hopefully we can also touch on the "extreme male brain" theory.


Kitty Parmley Cunningham said...

My son has ADHD, as does his father. I have long held the opinion that it is a trait that was very useful for a shepherding or hunting life. That awareness of everything going on all around you just seems suited to that. It doesn't fit public school in the US, but I think it is more a question of finding the right place to use it rather than that it is simply a hindrance.

I'll be pondering the purpose of the Aspie trait all day, now.

Thank you for sharing.

NiroZ said...

Hmmm, well the neuropsych I've done does support a significant permanent neurological effect, and IIRC, the heritability of it, as well as the kind of neurological abnormalities seen support a significant genetic compnent (although ruling out other factor's leading up, and slightly past birth are difficult to rule out, due to critical periods and the like). (IIRC, small parts of the brain drifting)

While I agree that the NT and the ASD are not inherently superior than each other, I'm not sure that saying if only ASD existed it would be fine proves that it is not a disability. After all, by the same argument you could say if we were all born blind, we could say the same thing, as even though it doesn't improve anything, the increased attention we could place on, for instance, sound, could be touted as a benefit.

The fact of the matter is, somebody with an aversion to loud noises would be disabled everywhere (if only by thunderstorms) in relation to the norm. Yes, it may have other benefits, but that's not the disability. After all, even superman with a missing leg would be considered disabled unless he was able to compensate for the loss fully.

NiroZ said...

fnarg, forgot the tick the email box.

Shanti Perez said...

Thank you for this. I look forward to the second part and your discussion of co-morbid conditions. It is the co-morbid conditions, for me, that are debilitating. If I did not have depression, anxiety, and more, then it would not phase me so much, but with these add ons, which appear to be due to my confusion about the world which is based on the way I process as opposed to the way society acts/reacts, I seem to suffer a great deal. The anxiety gets so bad at times that I haven't slept for days. I start obsessing over a social situation that I do not understand and I can't let it go. Years of this and growing older has worn me out. I got to the point where I was unable to function within the standards of 'society', though I can accomplish things sporadically and when they are things that do not cause added stress. In other words, I do OK when I am not 'forced' to keep a routine or deal with social situations when I am overloaded. I have to recharge whenever I need to--and this is never dependent upon environmental obligations. If I cannot have downtime, then I will stop functioning due to confusion and stress, which will turn into depression. It's a vicious cycle. And I definitely belong on a farm. :)

Nancy said...

You actually touched on one of the reasons I've avoided having my (now 8 year old) son diagnosed with ASD. He is very much an individual and many of the things that work for him I've been told don't work for "autistic kids". I don't necessarily believe that but my fear was if we labeled him HFA he wouldn't be exposed to a wide range of things that stereotypically are avoided when an autism diagnosis is given. Now that he's more of an individual and we can see what he needs to work on and the supports he needs in school I'm going ahead with the diagnosis because I've found a few programs that suit his needs.

I agree with you that Asperger's and HFA are better grouped together than more severe forms of autism. It seems unfair to compare my son's successes with the far more modest successes of my friend's severely autistic son. She moved to a particular community in a particular state to put him in a school with a high success rate in bringing autistic children out of their shells but by the age of 5 or so they had written him off as not "recoverable" but maybe the kids they deem successes were never in the same place as he was. Different programs work for different kids but calling a highly verbal and outgoing child autistic and also calling a completely non-verbal child autistic seems to me to be unfair to both.

The Rambling Taoist said...

I agree with your overall assessment. I too think it's genetic. When people ask me to describe Asperger's, I just tell them that my brain is wired differently than the norm.

Anonymous said...

I mostly relate and agree with what you've said in this post except for the part about evolution. I'm a big evolution nerd.

I don't think it's fair to make up reasons for Aspergers' evolution because in tribal/nomadic/hunter-gatherer societies, most of the symptoms of ASP would be completely useless.

Thinking deeply is something that has only become prevalent in more recent times because people have time during which to think. They didn't when it was work all day, sleep all night. We also have a far more diverse occupation base which can cater to the needs of most aspies. And a lot of aspies in early society would probably have gotten themselves killed by senselessly pursuing their special subject.

Further, even if ASP is genetic, that doesn't mean that environmental toxins can't make more prevalent in society. Toxins can damage DNA, turning some parts on, other parts off. There's a whole field of biology concerned with turning genes on and off called epigenetics.

Tamala said...

I lived for periods of time when I was young with no electricity, motor noises or other modern stimuli. I think most people don't realize how peaceful and low noise the pre-modern world was. The noises you did hear conveyed some information about the world.
I love modern conveniences but I still register when the refrigerator turns on or off. We constantly hear meaningless repetitive noises all day wherever we are.
Plus, how many new people did pre-modern people meet and have to socialize with?

bludancer said...

i agree also that it isn't the AS (or in my case, NLD) that's so debilitating. it really is the co-morbid's. (it is true: i would love to have a better sense of direction. but this seems to me a minor tradeoff for the learning strengths that i do have as a result of my "disorder.")

depression, anxiety, ptsd... those are truly difficult. they do seem to occur in those on-the-spectrum at an alarming rate. i'm hoping that as neuro-diverse people adapt to the world, the NT culture makes a few adjustments as well. (for instance: will bullying become less severe as others become more educated about us? will it become less embarrassing to say things like, "i have to leave the room because the high pitched music (etc.) is hurting my ears?"

will there be a little more tolerance for social errors?

i do sometimes wonder how stressors would change if i were NT. i do wonder what it would be like to have an intuitive grasp of the way that "world" works. i don't wish to leave my NLD behind, or my aspie traits (i treasure them.) but a less stressful environment--that is a thing to wish for. :)

Hartley said...

I am going to echo the agreement with the post as well.

My now 8.5 year old son suffers MUCH more with issues surrounding anxiety and depression (borderline Bipolar) then he does with his HFA (he is adopted from a bilingual home and had a speech delay--I believe as Gavin suggested that he is "Aspergers" and will get that label by adulthood).

My son's best summer was one we spent in small town Kansas where he could dig, play in the mud, pull the wagon, disassemble the brick pile, stack the fire wood and more. Due in my opinoin to the fact that it was quiet, calm, unscheduled and he had TONS of activity (sensory input).

I too believe it is genetic. I also let people know, that with that belief (that my son was AT LEAST genetically predisposed to having Aspergers), he has been SUPER over-vacinated, which should've made him fully autistic (trust me if you saw his vaccination list you'd pass out), but it didn't. Makes me lean, in my own mind, towards the simple genetic link.

Also, just in closing, my son's "disability" makes him fantastic at many things. His neurological make up lends itself to having "strenghts" which I believe will benefit him as a person in his lifetime--things such as a strong sense of fairness and justice, an emense love of science, and a loyatly to his friends, family and hopefully some day his wife! :)

Thanks again Gavin for another discussion provoking post,

M said...

I'm subscribing to the Gavin Overview. Well put. I'm going to start cutting and pasting your descriptions into my words, I could put this any better.

xine said...

Great post. I look forward to your thoughts on the 'extreme male brain' theory. :)

Stephanie said...

While I will echo the general agreement, I have one major disagreement:
"After all, what good is a label if you can't say "this person has X" and expect everyone to have a fairly good idea of the range of symptoms you're referring to."

Labels do not work that way, except in the form of a stereotype. Labels are a linguistic tool to share information, but they are only effective to the degree that there is shared understanding of the meaning of the label. Even when shared understanding occurs, this does not mean the label is accurate.

For example, "table" is a label that is generally understood. But, think about how many kinds of tables there are: kitchen tables and end tables are just two examples. Yet, put two kitchen tables or two end tables together at random, and they're not going to look anything alike--except they will have a predominantly flat surface and have legs.

Another example, what does "black" mean, in reference to a person. For some, it means anyone who has had an ancestor who was physically black, even if they do not look physically black. For others, people must "qualify" as black based on entirely different terms. In some people's minds, it involves traits and characteristics that have absolutely nothing to do with skin color. Whether's it's that black people dance better or that they're all hoodlums, you're talking about a stereotype.

"Autism" is no less subject to stereotypes, nor are other conditions. Knowing someone has a diagnosis of bi-polar disorder does not prepare you to know what to expect from that person. Knowing someone has ADHD does not prepare you to know what to expect from that person.

People may want labels to be useful in accurately placing people in little boxes of pre-conceived attributes, traits, and characteristics; but, people and their differences are a lot more complex than the short-hand labels we attribute to them. Labels cannot accurately serve this function.

Miguel Palacio said...

What comes to mind is Someone who got himself crucified for pursuing his particular interest. Yet, was it worth it? Me thinks yes.

Miguel Palacio said...

I agree that labels can be misused, mainly tho, thru over generalization.

Also, do you suppose that speaking in parables is an aspie trait? I do that all the time when I explain things or am training people.