ASD... not valid diagnoses?

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Quick note: I mean validity in the sense that it's used in, say, J Clin. (Yes, I read J Clin.) To those not in the know, that means how likely it is that, if I test you now and I test you five years from now, your diagnosis will stay constant.

What I am NOT saying is that your impairments are not present, or that your great strengths are in some way unimportant.

So. The Heather Kuzmich thread ( ) got me thinking about how successfully some of us "fake normal." The current (as of this writing, DSM-IV-TR) criteria require impairments in learnable skills. What is present in Asperger's is a brain wired to process information differently. This means (focusing, for now, on the negatives) that we're not hardwired to, savant-like, pick up on every minute detail of every face that we see in a totally different area of the brain from other visual processing, then pull out that information at a moment's notice, comparing a new face to every familiar face and coming up with a match at a moment's notice. We're not hardwired to have normal body-language. We are hardwired to stim and obsess.

When anyone defies his or her wiring, it's difficult, but possible. You learn to study a face, to process it with your regular visual processing apparatus, to memorize it consciously at least well enough to differentiate between confusables. You learn, through books or classes or dedicated parents (or videogames, in my case), to contort your zygomatic major and orbicularis oculi muscles just right while moving your head just right and raising your eyebrows just right when you see one of those faces and determine that it belongs to a friend. Maybe you practice so much that the amygdala learns its responses much the same way, and you develop near-normal feelings. Maybe you look at yourself in the mirror long enough that EEP EYES EYES EYES no longer scare you. Maybe you learn to focus your eyes there.

Maybe you read so voraciously that you discover a character who waxes philosophical about the nature of friendship, and begin to understand interpersonal relationships. (By the way, does anyone here know whether developmental prosopagnosia ever spontaneously gets better? Because when I was little I remember being surprised to find that other people could recognize the same face with different hair-- that meant that for a long time, recognizing people of different races was flat out impossible-- and when I was in my early teens, I realized my dad had a big nose; and when I'm at school now, I recognize students and teachers like nobody's business. Though by "like nobody's business" I realize that I mean "below average but within the normal range for an NT.")

Whatever the case, you use a workaround or brute-force your way through. You don't just know it. But you learn it, just like (to use that idiot shrink's analogy) learning to drive a car. That's something no one's hardwired to do ("Grr, Caveman Thog invent car and caveman girl flock to Caveman Thog now"), but it can become automatic with practice.

Leading to a rapid closure of the gap between you and your peers (especially once they quit being merciless, evil abominations that could never possibly grow up into human beings). Leading to normal body language. Leading to a new understanding of other people, and with it, social and emotional reciprocity.

Leading you not to meet one of the diagnostic criteria even though you get tired from socializing and had to learn these things consciously.

Leading to shockingly low validity for a chronic, incurable diagnosis.

Autism and Asperger's have very little validity. The DSM-V should do something about that.

It seems to me that whether or not one tests the same way in 5 years doesn't indicate if a diagnosis is valid.

In 5 years, I won't have a broken toe diagnosis. That doesn't mean the doctor was wrong with his diagnosis.

I think with mental health / neurology diagnoses, just because something doesn't last for 5 years (or changes significantly such as to affect diagnosis) doesn't mean the initial diagnosis wasn't valid.

I think he's saying the criteria in the DSM IV are not very good, rather than calling a particular diagnosis invalid as the patient adapts to the symptoms.

Instead of a broken toe that was originally whole and repairs itself, we have more of a child born with a withered leg, learning to walk. The child's leg will still be withered, he will learn to walk more slowly than other children, and his gait will be awkward, but he will have adapted to his condition.

The DSM diagnostic criteria for identifying AS are for identifying AS in CHILDREN.

No psychologist with any experience with Autism will expect that a teen, much less an adult, will display all the same characteristics in the same way or to the same degree, because humans develop coping mechanisms ('faking normal') to work around their deficiencies.

AS is a learning disability, not a learning inability.


The only Mental Health professionals who do not take this into account are those who don't know their Autism from a hole in the ground. Unfortunately, that's a lot of them.

Excellent point, Willard

Does anyone stay the same from birth to death? We all change as we grow, so why would the same criteria apply to adults and children, both?

As usual, Willard has a great answer!

There is at present no clear or simple way to diagnose adults. If you were not diagnosed in childhood, as I was not, then you are pretty much left hanging and hope for the best. I have to believe in my heart that the diagnosis is correct, because it is the best I have to go with.
It has made me feel happy and understanding of myself. That is all there is.

It opens up a whole new can of worms, trying to define what it means to have AS as an adult, how much in control of our own destinies are we, can we define ourselves and to what extent? How limited are we by the diagnosis? It varies from individual to individual.

lol, I'm sorry, I just scanned the thread and I may be misunderstanding but IMO Heather K wasn't doing a spectacular job of passing for normal, not that it's something anyone should try harder to do if it's not something they can handle, I just don't think she's a great example.

Dan Akroyd is what I would I would call passing for normal.

Exactly. We need diagnostic criteria that, instead of focusing on behaviors that can be learned or extinguished, focus on thinking style and innate capabilities. Just because I do something that's hard doesn't mean I do it with ease; can't we measure the difficulty?

Seems like the the problem of defining something from the outside in -- the DSM criteria being based on behavior only. If an ASC person and an NT person behave in similar ways, you have no idea if their internal processes, experience, etc are similar or not at all.

I think the bold part is the critical difference. Also, the long-term effects of continual low-grade (or not so low-grade) trauma. And suppressing looking distressed from sensory overloads and other things. And on and on. Internal experience matters, and I've never understood how behaviorism can't be considered very dangerous in light of it's being completely unconcerned with internal experience.

Until ASC people are writing the criteria I can't see things changing much, though. Can't have the 'lunatics' running the asylum, after all.

I have a diagnosis of ASD, and I'm about as impaired as someone with multiple sclerosis (a disorder that doesn't always have physical evidence in the form of lesions in the brain). O, and I'm more impaired then the four people with Schizophrenia I've seen, one which is a relative.

If that ain't real, then nothing is.

i'm with you here. i think the lunatics should be running the asylum, so to speak.

ASD specialists should be learning what ASDs are like from people who are on the spectrum, not telling them what it's like (or what it looks like, really).

totally agree the diagnostic criteria are meant for children (ok, boys) and focused too much on behaviors/traits and too little on underlying cause. if someone can communicate (in any fashion, by speaking or by typing or by throwing things) people should be listening.

There are also a lot of them who do not believe in childhood Bi Polar disorder or any other form of mental illness in children. They want to diagnose everyone who walks through the door with ADHD. I went through several different Psychiatrists while my son was in and out of hospitals and juvenile hall until I finally found one that knew what he was talking about. Too bad it was too late by then!