HOUSEKEEPING (Big news and a SURVEY!!!!)

Dear Persons,

I hope this post finds you well.

 

And it may not have found you as it usually would, as the app that sent out my posts to subscribers stopped working with Blogger. If you’re here and would like to be notified of future posts, try the new subscribe button at upper right. I don’t know how these functions work, but I didn’t understand the old one either. I’m just hoping it will work for you! With almost 300K readers, FSM has been a success beyond my wildest dreams, at least in the connection department (still waiting for the enormous financial windfall so typical of personal blogs about family and differences…). 

 

Lots of other news in Full Spectrum Land. I do hope to have some new substantive posts in the coming months but for now:

 

1.     My first book about neurodiversity is coming out on 2/21/2022. Written in collaboration with Jenna Gensic of the Learn From Autistics blog, The #ActuallyAutistic Guide to Advocacy: Step-by-step advice on how to ally and speak up with Autistic individuals and the autism community integrates more than a hundred interviews with Autistic people to offer guidance to anyone looking to thoughtfully, respectfully, effectively self-advocate, or advocate/ally with Autistic people. 

 

Both Temple Grandin and John Elder Robison have already endorsed the book!!!! I’m over the moon. I’ll get a link up here when it’s available for advance purchase. You’ll also be able to contact the publishers for review copies. WOOT.

 

 

2.     We’ve begun work in earnest on BOOK TWO!!!! This book will cover many of the same advocacy themes but from a teen and young adult perspective, with a special focus on BIPOC, LGBTQIA+, and other intersectional perspectives. 

 

To that end, we are looking for Autistic teens and young adults to fill out our survey, so that we can include the broadest range of voices possible. By the way, we consider self-diagnosis completely valid. If you or anyone you know fits the demographic (that is, ANY Autistic teen or young adult), please click ****here****. 

Feel free to forward this survey link to anyone who might be interested. Please also note that the survey is long. Take your time, use the save/cut-and-paste options if helpful, and absolutely feel free to skip questions that don’t interest or relate to you. The ONLY required question is contact info.

 

Our survey was designed and is being disseminated with the brilliant and powerful young folks at Detester Magazine. 

 

Here are some links to find out more about it:

 

·      Instagram survey post 

 

·      Instagram podcast post 

 

·      Facebook survey post

 

·      Facebook podcast post 

 

Thanks and love,

Full Spectrum Mama

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

Dear Persons,

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

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

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