Monday, January 27, 2014

Neurodivergence and The Term Normal

Young girl to Azeem:                          "Did God paint you?"
Azeem (Morgan Freeman):                  "For certain."
Young girl:                                           "Why?"
Azeem:                                                 "Because Allah loves infinite variety."

- "Robin Hood Prince of Thieves"



I'm on a mission to throw out the word "normal" from vocabulary and dialog related to autism. The main reason is no matter where I travel in the world or who I meet, I have never come across a "normal" person. The word normal in the lexicon of autism is used to denote an idealized average child. Neurodivergent children, like human skin colors, cannot be based upon any ideal. There is too much infinite variety in everything else about us. Why should our neurology be any different? 

Image Description: Series of photographs of people of widely varied colors under each person's photo is the Pantone number that exactly matches their skin tone ©Angelica Dass pantone skin color spectrum chart


Artist Angelica Dass has raised the bar on cataloging the spectrum of human color variation with her Humanae project. There is no one in any discipline that serves the autism community cataloging and mapping the spectrum of neurodivergence in people.  When research is done on neurodivergence it is never done with the intent of cataloging divergence as variation and recommending accommodation and support where neurology poses barriers to inclusion.  We do not have a map of  the spectrum of divergence in neurology. As long as we fail to properly study the human brain before making sweeping decisions, such as creating and prescribing medication to suppress and "correct" things we don't understand,  the term autism will continue to be used as a multimillion dollar medical model cash cow boogie man that is of no benefit to either neurodivergent people or their families. To set a standard mid point in a bell curve of what constitutes "normal" brain function without cataloging the entire spectrum of human brain variance on this earth is a bizarre way to go about science. An interaction I just had with my neurodivergent son brought to mind the reason for this part of the culture of ableist viewpoints in perception of neurological difference. Most research is done without the input and needs assessment of autistic people themselves. So they have no voice in what is and is not done with regards to the idea of accepting variations in neurology in general and diverse autistic expressions in particular.

Before you rush to say you know of any "normal" person start by defining what normal is in your mind. You'll find that 'normal' neurology is heavily culturally defined.

Look at your neurodivergent loved ones as who they are. Don't compare them to a societally imposed standard they aren't met to meet and find them lacking. Then see about advocating for services, supports and accommodations that will help them gain societal inclusion, autonomy, self agency and self advocacy. Expand beyond the limits of terms like 'normal,' understand that variance in neurology like variance in every other aspect of human expression is meant to exist and help to work on cataloging, understanding, and embracing that variance. 

Peace



For Sharon da Vanport

8 comments:

  1. Wonderful, Kerima!

    You nailed it when you said: "The word normal in the lexicon of autism is used to denote an idealized average child. Neurodivergent children, like human skin color, cannot be based upon any ideal."

    <3

    ReplyDelete
  2. It only makes sense to talk about “normal” as a “process”, not as an outcome. Any outcome of a “normal” process is “normal” by definition, even if the outcome is atypical.

    The problem is that people want to talk and think about “normal outcomes”, and the presumption is then that if the outcome is “abnormal”, then the process that resulted in that outcome must have been abnormal too.

    For some extreme examples; the normal outcome of not eating is death by starvation. PTSD is the normal result of living in an abusive situation.

    An example I like to use in terms of development is the case of Abigail and Brittany Hensel.

    http://en.wikipedia.org/wiki/Abigail_and_Brittany_Hensel

    As far as is known, their physiology is “normal”. What happened during their development is that there was differential amounts of cellular adhesion during development in utero. If there was slightly more adhesion, they would have developed as a single individual. If there was slightly less adhesion they would have developed as MZ twins. If slightly more is “normal” and slightly less is “normal”, what basis is there for saying that the intermediate level is abnormal?

    What this demonstrates is that the “normal” process of development can produce both typical and atypical outcomes.

    My hypothesis is that the development process that evolution produced has dispersion built into it. A tribe of individuals with diverse cognitive abilities would do better than a tribe of individuals with all the same cognitive abilities. Being able to draw on diverse expertise is always better than having only a single choice of expertise.

    ReplyDelete
    Replies
    1. I love when I am able to read a more thorough hypothesis than my own rambling thoughts. This is excellent thank you for your input.

      Delete
  3. Then there is this annoying fact that "normal enough" automatically makes you be able to be a part of a group. Then the word makes sense and might actually have a value of som kind. That is if you ever have the desire to actually spend time in groups (most have at times and they sure wouldn't mind having it work from time to time". Having the choice of being able to participate or not).

    ReplyDelete
  4. Wonderful explanation but I'd like to go 1 step further: as Kerima said 'define normal'. Personally I'd like to see it out of our vocabulary, customary might be a word to replace 'normal' in several instances for example. But following your reasoning Daedalus2u, what is it that determines that a process is 'normal'? Obviously the mind but again there are probably millions of different minds in this world. So whose 'normal' mind determined in the beginning that a process was 'normal'? And one more thing: normal today is understood to be compliant with the 'norms' that are usually dictated from the top down in society. If everyone becomes compliant with the 'norms' our world is doomed, we simply become good little sheep who conform because they have to appear 'normal'. But our wonderful diversities allow us to come up with new initiatives and ideas, investigate different things of interest, give us different skills, gifts and talents that unable us to co-create with only the limitations imposed by our minds. As to autism: we simply know far too little about this topic so far, what we know is what is being fed to us by 'scientists' who focus on autism from the 'normal' perspective that it is a disorder. I disagree with that opinion, in my perspective autism is simply a difference. I'd rather hear the views about it from the people on the spectrum themselves (Temple Grandin is a great example but there are other young people on the spectrum who express their views on the matter) it is time to hear their voice rather than that of science that is centered around the brain and finding a so-called cure while people on the spectrum insist they don't want to be 'cured'. Imagine someone wanting to 'cure' me from wearing 2 different socks or shoes, or writing with my left hand, or talking to trees and hugging them just because that would not comply with what is considered 'normal'. We are individuals, the beauty resides in our differences, we are not clones. BTW have you noticed that young children don't see differences in skin colors? In their eyes we're all alike as far as that is concerned.

    ReplyDelete
  5. Wonderful explanation but I'd like to go 1 step further: as Kerima said 'define normal'. Personally I'd like to see it out of our vocabulary, customary might be a word to replace 'normal' in several instances for example. But following your reasoning Daedalus2u, what is it that determines that a process is 'normal'? Obviously the mind but again there are probably millions of different minds in this world. So whose 'normal' mind determined in the beginning that a process was 'normal'? And one more thing: normal today is understood to be compliant with the 'norms' that are usually dictated from the top down in society. If everyone becomes compliant with the 'norms' our world is doomed, we simply become good little sheep who conform because they have to appear 'normal'. But our wonderful diversities allow us to come up with new initiatives and ideas, investigate different things of interest, give us different skills, gifts and talents that unable us to co-create with only the limitations imposed by our minds. As to autism: we simply know far too little about this topic so far, what we know is what is being fed to us by 'scientists' who focus on autism from the 'normal' perspective that it is a disorder. I disagree with that opinion, in my perspective autism is simply a difference. I'd rather hear the views about it from the people on the spectrum themselves (Temple Grandin is a great example but there are other young people on the spectrum who express their views on the matter) it is time to hear their voice rather than that of science that is centered around the brain and finding a so-called cure while people on the spectrum insist they don't want to be 'cured'. Imagine someone wanting to 'cure' me from wearing 2 different socks or shoes, or writing with my left hand, or talking to trees and hugging them just because that would not comply with what is considered 'normal'. We are individuals, the beauty resides in our differences, we are not clones. BTW have you noticed that young children don't see differences in skin colors? In their eyes we're all alike as far as that is concerned.

    ReplyDelete
  6. its really great to read you , great stuff you shared with us, i am going to share the link of theautismwars with my friends on facebook and twitter. appreciated
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    ReplyDelete