Saturday, November 8, 2008

Finding the Boundaries of Borderline Aspergers

Just a quick reminder that although I'm knowledgeable about Aspergers, I'm not a medical professional. I can only apply what I know and see to my own, my childrens and my friends/acquaintances conditions.

The Question
This post is in response to an interesting question I received via comment.

I am confused by the list in the DSM - IV that describes this condition a bit. I know aspergers is on a spectrum, so it doesn't look the same in everyone. Yet in the DSM -- IV it states that the traits which people have when they have aspergers have to significantly detract from a persons ability to thrive in social situations.

So assuming a case is borderline, where would asperger's end and a neurotypical person with a lot of aspie traits begin?

The DSM and Diagnosis
The DSM by itself is very confusing and opinions vary greatly from one doctor to another. Unlike diseases or physical problems, aspergers is still undetectable by electronic means such as X-rays, CAT scans etc. (Although I believe that some amazing results are starting to come through). This makes any diagnosis extremely subjective.

Some doctors don't actually believe in the condition, while others have very fixed ideas about the condition, for example; dismissing any children who make even the most rudimentary eye contact despite the fact that the DSM quite openly states in its criteria that you need not display all symptoms.

The other thing to remember about the traits of aspergers is that they aren't necessarily impossible for NTs. There are some NT people who dislike eye contact, some who have specific social interests and many who stim in one way or another. At this point, the only guide we have is the DSM which requires that you meet certain minimum criteria - all of which can be determined subjectively.

We are all still learning about Aspergers and nobody is quite sure where the boundaries lie.

There are two major schools of thought;

  1. Those who feel that aspergers is a base-level difference. A difference in the very wiring of the brain.

  2. People who feel that aspergers is simply a difference of characteristics. (the curebie approach).
Personally, I fall into the former category. I also think this is the majority opinion. though I know some people who support the second.

The Curebie Approach
If we look at the second option for a moment, it suggests that the difference is simply in the presence and strengths of the characteristics. In this model, there would be a sliding scale where at one end, there would be low functioning autism, while at the other, neurotypicality.

The benefit (and the problem) with this approach is that it gives parents false hope. It suggests that if you can eliminate the characteristics, then the child will "become" neurotypical. This is the basis on which a lot of (in my opinon, "crackpot and unsafe") therapies, such as behaviour modification, chelation, shock treatment and confinement are tried.

In this world, there are cases of varying degrees and it is possible to "learn how to be neurotypical". A borderline case in this world would be a child who is "mostly normal".

The Evolutionary Approach
The evolutionary approach is quite different. Put simply, it suggests that the brains of aspies are "wired differently". In this world, it is quite impossible for an aspie to become neurotypical but it doesn't mean that they can't learn to "present as NTs" when called for.

There are a number of reasons for my belief in this theory including the fact that the symptoms of aspergers spread far beyond mental characteristics and into the realm of muscluature. Aspies are often described as hyptonic (having low muscle tone) and this has very little to do with their mental state. It points to a wider genetic issue.

In this world, there would be no "borderline" aspergers cases. Simply cases where some aspies have learned to hide/control their symptoms better than others. All would think differently.

The Deer Example
I thought I might finish up with an example from the animal kingdom. About three years ago, I heard a doctor talking about ADHD (but it could just as well have been aspergers). He cited a BBC animal documentary that he'd been watching. There were a group of deer grazing in grasslands where a lion was prowling. All of the deer were happily eating - all that is, except for one. There was one deer who couldn't hold it's focus on the grass for very long. It kept lifting it's head an looking around. The slightest sound would distract it.

The distracted "ADHD" deer was the one who first spotted the lion. Although it wasn't a fast runner compared to the other deer, it had an advantage. It started running first. This deer was also particularly important to the herd as it acted as a lookout.

The documentary crew followed that particular herd of deer for a long period. They found that the particular "ADHD" deer repeated the pattern over and over again. It wasn't a designated lookout and the task wasn't "shared" with other deer. I think, that they hinted that the behaviour continued in the deer's offspring suggesting either "training" or more likely, a genetic difference.


Angela said...

Thank you for this post. It was very helpful. The more I read about asbergers, the more I understand my own husband and children, none of whom have been officially diagnosed (though two of my kids are going through evaluations presently).

I guess if it looks like an orange and it tastes like an orange, it's most likely an orange.

Socrates said...

As Larry Arnold said recently, "We are the night-watchman and the shamen"
Many of the 'pathologies' of ASC's can in different circumstances, be strengths.

After all, if they are such gross deficits, as many clinicians would have us believe, then why hasn't evolution weeded us out?

Tim Ellis said...

Hi Gavin, I have Aspergers and I LOVE your blog, it's almost as though Aspergers itself is your special interest. One question though, I haven't found any mention in your blog - yet - about Aspergers walking on their toes.

High Quality Mothering said...

Interesting, thanks for the thought-inducing post.
I will ponder on it for a while, I can tell!

Anonymous said...

As Tony Attwood says in The Complete Guide to Asperger's Syndrome, "Some adults referred for a diagnostic assessment may have the signs but not the clinically significant impairment in functioning necessary for a diagnosis." (p. 54) and "The DSM diagnostic criteria are still a work in progress." p. 53.

I think it's important to remember how new the diagnosis is, and that this doesn't mean that Asperger's didn't exist prior to 1994. The DSM changes all the time.

Pinklolly101 said...

Post from an aspergers:

Yes i have aspergers and i was diagnosed with it at the doctors (on 14th September, this year, after school) and i totally agree with that post whoever did it. Although i don't get why you've put T-shirts and mugs saying stuff like "I love someone with Aspergers Syndrome". Crazy. What's so special about somebody with Asperger Syndrome???

Nachtus01 said...

First, I wish to express my feelings to you about your blog.
I find that I am never disappointed when reading your blog. It is by far my favorite blog. When I read it, I feel an emotional connection that I rarely feel, a "kindred-ness" if you will. Although we are individuals and I do see some areas where our As affects us differently, I also know that we think in a very similar, deep pattern. I wish I could blog my deep thoughts, but I have tried doing this, and the deeper the thoughts are, the less focused I tend to be concerning writing it down. Not to mention that when I get in this "hyper-focused state", it becomes physically impossible to type as fast as I am thinking, and to try to slow my, "mental train", would result in a "train wreck".
I obviously cannot speak as to the beliefs of others on the autistic spectrum, however I am of the opinion that we are a base level difference. The reason behind my logic is simply, according to the definitions in the DSM, one cannot have Aspergers and Autism at the same time.
As far as borderlines, I wonder if we ever can really find a definitive border, because of the things that make everyone, (autistic, Asperger's, NT, the "breathing") unique.
For my own self, AS is something that just fits, almost as if tailor-made for me.
And just like any article of clothes you would have tailored for you, eventually, your body structure changes and you start developing, or filling out in places, so that it no longer "fits like a glove".
The same is true with me, there are aspects of AS that I have learned to deal with, quite efficiently, before I had ever even heard of the condition. Still, there are other things that as far as I can recall, and in conversations with my mother, were either never there, or were never noticed and recognized.
With that, I tend to look at it in a similar fashion to Angela (see above comment), who said, "I guess if it looks like an orange and it tastes like an orange, it's most likely an orange."
The key being, "most likely".
I might look like an orange, and smell like one, but I might be a tangerine, or a tangelo. Very similar, but not the same.

Anonymous said...

Let people be people. Why pathologize yourself? A lot of the so-called symptoms are just legitimate traits anyway. Why do people want to believe that they have a genetic social inferiority? At least let people grow up and decide for themselves. That way the people who want to be labeled that way will, those who don't won't, and everyone will be happy. Living in a society that pathologizes everything is hurtful and confusing and we need to go back to letting people have their personality quirks.

Larisa said...

hi. ive been reading your blog for awhile and just signed up to be a subscriber. tonight over dinner, my son said he doesnt like having aspergers. he is 14 and was diagnosed at 12. he is a borderline case - was tested at the age of 5 and dr catherine lord said he didnt have it. his biggest issue is social anxiety. what can i do to help him ease that, besides medication? he just wants a group of friends to hang out with and come over to the house. he has many friends at school, but none at the moment who 'hang out' after school. he has school refusal anxiety as well, so its hard for him to understand if he just went everyday, the friendships he has there would become stronger. he sees a spychiatrist for medication management as talks with him. weve tried psychologists and neurofeedback. there is a support group for aspie kids in our area by brian king, but its always full. any suggestions??? thank! and thank you for your blog. everything i read in here is exactly what were experiencing...

Anonymous said...

Hi, I am new . This website is awesome, I have learned a lot from it so far!

Tracy said...

I don't have aspergers but one of my sisters does and my son was just evaluated to be borderline. He is very much like my brother, who now to come to think of it is probably borderline also. To me, the difference is that the "borderlines" in my family don't neglect themselves as much. However, I do not believe that people with aspergers or autism makes them inferior in any way. In fact, because they are wired differently, they become outliers in certain fields, excelling where us "normal" people do not. They push science and arts to the next level. For example, my sister is amazing at drawing and my brother and son are amazing when it comes to math and sciences.

Anonymous said...

I don't know if I have it or not. I have some of the traits, but not others. I seem to have a need to hyperfocus. I always have a book in my hand whenever it is socially appropriate. When it is not appropriate, I feel sort of ungrounded, and sometimes fidget when I can get away with it without it being odd.I am starting to learn to "follow my breath" in conversation so I don't fidget and can continue to listen.
But I don't have sensory issues, and I figure out/pick up social cues easily.
My one social impairment is that I don't always hear when someone is done talking or has just paused, or else am in such a hurry/focused on my thoughts, that I will interrupt. However I know the social REASONS why this is annoying: and afterward I always feel bad. I am working on controlling this but it is hard to do.
I have lost 2 jobs due to this in 30 years of working, it sometimes comes up on salary reviews as something to work on, and I have selected and been selected by workplaces where this is not an issue (i.e. where others are rapid thinkers/talkers).

I think I may be neurotypical with a few of the traits, or be borderline A/S, or be borderline ADHD: as I stay on task, and finish things, and can concentrate, but I have trouble listening for a long time without also saying something. Am working on improving this trait.
But at this point in life, wondering what the usefulness is of pinning label on myself? I am not a child who needs services. But it would be more for self understanding.
I think that perhaps both A/S and ADHD may be traits rather than disabilities or something "bad". And the issue would be to adapt to the specific issues or situations caused by this and causing impairment(i.e. school, work, relationships, etc.). It is ridiculous and cruel to try to "fix" someone and make them "normal" when their mind works differently, and sometimes better.
A good analogy is to gay and lesbian: fifty years ago they were thought to be "sick". This caused many gay kids to commit suicide, or else live with self hatred. When they were beautiful: just different.
I have met a few people with A/S and they are always highly intelligent and interesting people with a lot to offer.
I realize though that A/S can cause issues in life and can be hard to deal with.

Have pride in who you are.

Anonymous said...

I agree with everyone who can't understand the modern passion for labels. AS can be debilitating for some people but not so much for others. Why not help the different 'traits'? ie: a child who has difficulty with 'normal' communication skills can be helped with that particular problem. Why label the child? Or a child who hates change can be helped for that trait. I also agree that AS people in particular seem to take society to another level, one 'normal' (label!) people have to chase. Just look at the incredible people in history who are said to have had AS. No disability is inferior. Just different. Anonymous.