Tuesday, May 10, 2016

CH-CH-CH-CH-CHANGES: A NEURO-IMMUNO-MOMENT


As I tell my students, there’s been a shift in the world of philosophy over the last few decades toward context and the particular. Philosophers and ethicists used to search for “the one answer;” now they tend to embrace a range of possibility in ethically/philosophically "appropriate" responses. Similarly, in the larger world, the presence and testimony of neurodiverse individuals and families have made room for a range of what is “normal,” as well as a diverse array of approaches to difference. Since SPD (sensory processing differences) and autism are a huge part of my family’s life, I’m curious about these shifts.

I’ve been seeing a lot in the press lately around the immunology and neurology of difference (my favorite article, which happens to be about schizophrenia - by the brilliant Siddhartha Mukherjee -  is here); I’ve also been seeing a nuanced view of “fixing” people that acknowledges the subtle, sometimes tragic losses our “fixing” can cause, along with potential positives (this slayed me [for the record: I was surprised that John Elder Robison chose this treatment, but that’s another post]).

I’ve been asking myself: if context and situation vary so enormously, how could there possibly be one answer to the sorts of questions we navigate when we and/or our loved one(s) are neurodiverse? Respectful disagreement, while not being super-well modeled by U.S. Politicians, IS possible! 

I’ll use the word “change” to represent a range of possibility, from “cure” to “heal” to “progress,” but want to be clear that I stand pretty firmly in the acceptance-as-is camp. However, I respect the rights of others to want and advocate for something different than what I want and advocate for...!

With all the current research into our immune and neurological systems, both of which are related to neurodiversity (as well as other differences), we are faced almost inevitably with the following questions:

Do you want to change?
Do you want your child to change?
Does your child want to change? (And, for non-verbal children and adults, how do we determine this?)
Or do you want society, community, family, institutions, and/or context to change?
Or BOTH?

We have limited time and energy (sometimes extremely limited!): where will you choose to put your energy? 
Into yourself? Your child(ren)? Community advocacy? General advocacy? Change? Acceptance? BOTH?

There are limited institutional, state, federal, international, and non-governmental/not-for-profit resources: Where do you think these resources should go? 
To funding a search for a cure? A cure for what (autism, SPD, ADHD, difference...?)? Therapies (Physical? Physiological? Psychological? Neurological? Immunological?)? Resources to support families? Resources for schools and other institutions? Advocacy for change in the direction of inclusion?

(And...Finally...Do you even have time to think about all this stuff?)



Figure I – Spectrum of “Appropriate” Possible Answers to Each Question
  

As I also say in my classes, complex questions may naturally elicit answers that are complex, even seemingly contradictory or inconsistent. Our immune systems and our neurologies are intricately intertwined with our ways of being ourselves. We have many, many layers in our approaches to and feelings about who we are – and who we want to be.

We all want to be healthy, function at our best, be accepted; yet these things can manifest very differently, and mean widely different things to different people. 

Acceptance and change can conflict, coexist, contradict, and/or complement each other...

The respect we offer individuals, presuming competence and sharing autonomy, demands that we honor the multifaceted array of possible answers in a multitude of contexts.

Love,
Full Spectrum Mama





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12 comments:

  1. Yes! I wrote about something similarly on the scientific parent site that was talking about autism and vaccinations...it is complex! Thank you for writing this and asking great questions in your classes! I like knowing someone like u is out teaching in the world!

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    1. Thank YOU!
      I sure am trying...though I find myself often in the "too frazzled" category!
      Love,
      FSM

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  2. You're absolutely right -- the balance of being healthy and figuring out what each individual needs greatly differs and each family needs to figure out what they need.

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    1. !
      Thanks for reading!
      Love and balance...
      FSM

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  3. Yes, complex questions do indeed elicit complex answers. I'm in the "what she said" camp (aka what you said) about acceptance, though I know it is not as simple as this. I would love to see society change and become more accepting, with supports in place for those who need it, but I don't see it happening quickly enough for my kid. This is especially true of the educational system, which is why this year we made the difficult decision to place him in a private school, and next year I will be following suit and hopping into the private realm myself. I also find the current research fascinating, but I choose to spend my precious time and energy focusing on helping my child to be the best version of himself that he can be, rather than attempting to change him. But, like you, I respect that others may feel differently, but I think the key word is respect. We just take it one day at a time.

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    1. The whole school issue is beyond huge and it sounds like you're finding good fits. Finding a place where my son would be accepted and RESPECTED took ALL my energy for so long.
      I so hope the private school you've found is a great fit and I wish you a successful and enormously lucrative (that's why we become teachers...right??) transition yourself. Wishing you good luck and a hefty dose of respect,
      Love,
      FSM

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  4. I just read this blog entry on " fixing " or acceptance of differences, and it made me think of 2 things: 1. I, and my kids have a physical disability that docs keep trying to mold into a " normal " body, when i bodies are " normal " for us. And 2. Learning acceptance is what im learning to do in therapy, and i view this an positive cause it helps with my anxiety, but i think the " normal " population of our country needs to learn to accept that there are many different types of people, and why cant that be " normal" ?!

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    1. Completely and utterly agree. That's why i write! Thanks for reading!!
      FSM

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  5. In a world where everything is becoming so tribal, like "us" against "them", it's refreshing to deconstruct these questions because it's never a one-size fits all approach. I love that! I think I'm "all of the above" but really pushing for acceptance over more research. There is so much work to be done in terms of acceptance because the world views our kids like they're broken. I'm optimistic about the future, though. Thanks for your sense of humor ;-)

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    1. Very, very wise framing of what i was trying to say! Thank you so much.
      Love,
      FSM

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  6. "The respect we offer individuals, presuming competence and sharing autonomy, demands that we honor the multifaceted array of possible answers in a multitude of contexts."

    Amen! Preach it!!!!

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