What’s in a label? (take 2)

In my last posting, I wrote the following about the consolidation of Asperger’s Disorder and PDD-NOS into a single classification for Autism Spectrum Disorder:

My experience leads me to believe that many people don’t understand the concept of a spectrum unless they can clearly see the boundaries between the different layers of the spectrum.

This generated some interesting conversations that have helped me as I figure out what I think.

Of course, the problem I had with combining these separate diagnoses into a single one – that people would tend to see all autistics as “the same” – also exists with the more “specific” diagnoses. It’s just that now you’ve got several variations on the theme: all Asperger’s is the same, all PDD-NOS is the same, all Autism is the same.

Thinking about all this reminded me of the expression “If you’ve met one person with autism, you’ve met one person with autism.” We are making a lot of process in getting this message out, and identifying autism as a spectrum could help with this even more.

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6 thoughts on “What’s in a label? (take 2)

  1. Valley Girl, Slacker, Old Hippie, Democrat, Republican, Jock, Geek…

    We humans love our labels. It is very human (at least NT human) to want to generalize and categorize everything and everyone. It makes things easier for us. Most of the time, such thinking helps us to form logical rules for solving problems. Sometimes such thinking makes us miss important findings, as we ignore the “outliers”.

    Joe

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  2. NT is a label. Depending on who you ask, it might be a positive or negative label.

    In this context, the labels we use (NT, autistic, etc) are intended to create an “us vs. them” situation. That is another problem with labels that are too specific.

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  3. I am the dad of a four year old whose behaviour baffles the experts. He presents approximately 50% of the symptoms of Asperger’s, sometimes all at once, sometimes in interludes of apparent “normalcy.” They’ve ruled out ADHD, behaviour disorder, and other scarier things, so he is currently considered behaviourally delayed and thanks ot the Highest, has an IEP….what I have learned concerning Autism and all conditions considered to be related–they should be classified as developmental-structural–organizational–sequencing, intensity and attentional disorders of unknown cause and progression. Nobody understand the causes, so considering all of these observed expressions or symptoms to be related or part of a spectrum is the sort of predicate thinking that science should have tossed out long ago. We are still trying to identify the exact accompanying conditions, let alone any remedies and cures. Some people have given one or another sort of therapy or treatment to people in the so called spectrum. Some people who receive this help are observed to partially or almost fully “recover, then, voila, CURE!” Sheesh, just because A sequentially precedes B is not implied causation. I have a degree in Biology, and years of experimental experience. I know how it works. Medical pseudo-science and dogma has in many cases been a total obstacle, or irrelevant at best. We need to move inquiry into the hands of compassionate objective and open minded researchers with no prejudicial agenda, ideology, or profit motive.

    Since there are so many somatic developmental issues that too frequently accompany the traits identified as ASD’s, we need studies that are embryological and early childhood development focused. We also need controlled nutritional and gastroenterological research.
    Food Inc. and Big Pharma will resist this, but, they need to be reminded about things like Thalidomide, which they adn regulators all told the public was just fine for us and kids. The rates at which kids adn adults are now being diagnosed with ASD’s are evidence of the sufficiency of the impact of the causes, whatever we discover they are.

    What we all need is a national effort like the March of Dimes that can obtain recognition, serious scientific and medical support combined a PR campaign to elicit empathy for families, with awareness that there may be no rapidly approaching magic pill or bullett because the causes may be so diverse that we’d need millions of unique “cures.” At the same time, coping and accomodation may help families and PWA’s get on with something like happy carbon based living.

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  4. Gee, sorry, we also need more neurological studies, psychological studies, longitudinal educational studies, educational support, therapeutic support, and efforts aimed at helping ASD’s and society learn to work and live with each other. People should not become “diagnosed” at age 18…there is clear evidence that at least incremental improvements for all result from early intervention. Then, there are people like Temple Grandin…gifted people are always a little different, and it seems she may be someone simply more gifted than most. Had she had what it took at younger ages, just imagine!

    Many of these people are extremely gifted, and deserve recognition for their talents and the contributions they can make are awesome, if we just find a way to accomodate , enable, and support rather than ostracize. Some, on the other hand, struggle to perform even one or two of the activities necessary for daily living. If we are a society based on the best values and aim at being guided by the best moral standards, then I suggest we have a lot of re-thinking and reorganizing to do in this matter.

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