Showing posts with label autistic. Show all posts
Showing posts with label autistic. Show all posts

Wednesday, January 19, 2022

BOOOOOOOOOOK!

Dear Persons,

 

I hope this finds you cozy and well despite these challenging times.


As Madeline, Judy, Celeste, and I convened for the first time 10 years ago (this month!) to discuss our initial writing group submissions, we could not have imagined what we would all go through in the following decade—or the world we would live in today.

 

Nor would I have dared to dream that the wee blog I began that day would grow to have hundreds of thousands of readers interested in neurodiversity...and ultimately result in a book collaboration that means the world to me. 

 

I'm over the moon to let you know that my first book with Jenna Gensic, The #ActuallyAutistic Guide to Advocacy: Step-by-Step Advice on How to Ally and Speak Up with Autistic People and the Autism Community, is available for pre-order here

 

Please stay tuned for more release information and reach out (my email is jineffable@gmail.com) if you'd like to help spread this book's message. We believe this text will serve Autistic people themselves, as well as families, educators, therapists, caregivers, friends, partners, employers, and anyone else who'd like to know more about Autistic perspectives.

 

In addition, we've begun work on our second book, The #ActuallyAutistic Guide to Teen and Young Adult Advocacy and Activism: Step-by-Step Advice for Autistic Youth and Those Who Care About Them. 

 

We're asking all interested Autistic teens and young adults to fill out our survey. Here are the links if you fit this demographic or know anybody who does (please only fill out one version):

 

SHORT survey: https://forms.gle/qKRmuAVsCCwEAF4A9

LONG survey, for people who really like writing: https://forms.gle/FYhmxMmvoYWpcX1e7

 

Thank you so much for being a part of this journey to spread inclusion and awareness!


Love,

Full Spectrum Mama

Goodreads Book Giveaway

The #ActuallyAutistic Guide to Advocacy by Jenna Gensic

The #ActuallyAutistic Guide to Advocacy

by Jenna Gensic

Giveaway ends April 30, 2022.

See the giveaway details at Goodreads.

Enter Giveaway

Wednesday, September 8, 2021

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 blogThe #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

Tuesday, July 9, 2019

NOT A DISEASE




As a family of vegetarians, we’re always on the lookout for veg-friendly places to eat when we go on the road. We recently ended up at a gluten-free establishment in the Midwest. Pretty good food! But I won’t mention the name because I did a bit of stealth activism there and I don’t want to make any assumptions about the owner or staff or clientele… 

You could get your own water and bus your dishes etc. toward the back of the restaurant, as well as use the bathroom. And there was also a help-yourself bookshelf full of stuff to read back there. I am always down for a good read, so I took a look. 

Well, the books consisted almost entirely of books about autism. But not just any books. 
“Cure Autism With This,”  “Cure Autism With That,” “Get Rid of Autism With The ___ Diet”—you get the idea.   

I felt ambushed—and horrified. I’ve spent all my parenting years trying to get my kids to love themselves as they are. Sure, I’ve read my share of books about the various nuances of our lives, such as adoption, autism, racism, neurodiversity, learning differences, behavioral differences, trauma, etc. 

And hey, yay healing! We all have stuff to heal. 

Heal away! If, in fact, it’s something that needs to be and can be healed. 

But I’ve always operated in a context of acceptance and diverse perspectives. This felt like a full-on, unilateral assault on being autistic—however well-meaning. 

I quietly went back to my table, took out my mini travel notebook and began to write. Then I went back to those shelves and placed a note in each book: “Autism is a neurology not a disease.” 

And on the long drive home from our trip, I thought about the ways our culture pathologizes so many things that might better be treated as normal and healthy aspects of the human condition. 

Being shy? A serious condition. Same-sex love and desire: a psychological disease? Until shockingly recently, the majority of people, including some scientists and doctors, thought so. Cellulite: abnormal but “curable” (hah!).  Are you little bit weird? That’s weird. Maybe kind of…spectrum-y? Better treat it. 

We even treat getting older like a disease. In fact, I’m embarrassed to admit (even to myself) how much of my internal dialog consists of self-criticism over my age spots or crepey skin. How ashamed I feel on a very gut level about aging, despite being a feminist and never, ever ageist with others. 

Um…HUH? What’s the alternative

When will we wake up to the full range of beauty?

Thanks and love,
Full Spectrum Mama


Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!
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Tuesday, May 8, 2018

GOODBYE, NAMEY OLD NAME THE NAME

Dear Persons,
There’s something I’ve been struggling with for some time now.

To make it less loaded as a puzzle, let me start with a lighthearted example. Let’s say there’s this thing we call a chipmunk. We use that name to refer to a particular type of creature, a small, orange-y, striped, cute one; and to distinguish it from the larger, less-cute (to some), similar-but-usually-grey animal we call the squirrel, not to mention any number of other rodents and animals. It’s useful to have a shared name for this distinct creature. And we may even have other names for individual chipmunks, such as “Little Jerk,”  and “Garden *&%#$.” But we always know what chipmunks are — and what they are not

But what if we found out that the very word chipmunk was problematic? What if chipmunk was another name for, Oh, I don’t know, a possible Nazi-sympathizer

Besides it being a commonly-understood term — and an erstwhile diagnosis/label (one no longer widely accepted in the professional/medical/neurological sphere) — why do we use the word Asperger? I had to take a hard look at my own usage and I realized that — although I do avoid the term “high functioning autism” (or HFA), because I think it has questionable implications and is implicitly comparative of human beings — I have typically used Asperger somewhat in the same way. That is, I have unconsciously used this term to make it clear that my son is the kind of autistic person who has special interests and above-average intelligence, etc. That was wrong of me — as continuing to use this term would be. 

At the same time, I also used the term to describe him because the general usage/understanding of this term really fits G as he is: highly verbal, quirky, not so great with social cues…But that’s not going to fly anymore. 

Autistic and on the autism spectrum seem fine to me, but a little too defining/labeling for day-to-day use (I do not like autism spectrum disorder as I do not frame different brains as inherently disordered!). From now on, I am going to use the term neurodiverse. Yes, it’s slightly meaningless (a la “tasty” — oooh, it has a taste!), but it neither refers to a kind of human being by the name of a criminal nor distinguishes between neurotypically devised “levels” of “functioning.”


Thanks and love,
Full Spectrum Mama


P.S. I completely understand and honor those individuals and organizations who’ve chosen to stay with this name, or who chose it prior to knowing about the complex history behind it. This is my choice, for myself. 


 
Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!


Thursday, October 30, 2014

AUTISM, EMPATHY, JUSTICE & LOGIC – A NEURO-MOMENT


My gal A and I love to have Spectrum Fests at a nearby lake where we talk feminism and injustice (our shared special interests) and our boys try to work out how to play together when their special interests don’t match. These are special times for us because once the school year hits the fan we both get pretty buried. A is a single Mom with a son on the spectrum. She used to be a student of mine at the Community College and is now about to graduate from a Seven Sisters college via its 100% full-scholarship program for non-traditional students. Go, A!

Last summer, A told me about a study she’d read claiming that logical people actually have more interest in justice, and tend to act more from the impetus of justice than do less-logical people. This made sense to US, as logical, spectrum-y, eggheaded, highly empathetic people. But it flies in the face of a lot of allistic ideas around autism.

The article, “Concern for justice linked with reason, not emotion,” contends that those of us who are “cognitively driven” tend to make the sorts of  “sophisticated analysis and mental calculation” that lead us to act based on logic rather than desire.

In other words, we don’t do kind things because we feel we should because it would be “good,” but because we know we should because it is right. That type of motivation has been shown to be significantly more compelling than emotional incentives. It leads naturally and inevitably to increased justice-orientation – and, thereby, to an increase in just actions.

Reason – a.k.a. logic – is the enemy of moral relativism as it is often used: as a tool for justifying asocial desires and actions. By asocial, I refer (perhaps somewhat polemically) to desires and actions that increase inequality and injustice. I contend that my logical nature, and that of most of the other spectrum-y people I know, precludes judging such actions as acceptable.

One of the many, many benefits of being a Professor of Ethics is learning to distinguish empathy from moral relativism. I’ve always felt that the gross disparities in peoples’ lives were unfair – and resented the attempts of people I saw as privileged to equate their problems with those of others who clearly – to me – had harder lives. Empathy means having compassion – literally, with-feeling – for someone; it means understanding them as best you can and, to a reasonable extent, acknowledging their concerns. It does not mean acting as if all struggles and challenges are equivalent – or accepting cockamamie, hypocritical excuses for what basically amounts to doing whatever the heck one wants. As Albert Einstein (a beloved Aspie role-model and ethicist, among other things) said, ““It is abhorrent to me when a fine intelligence is paired with an unsavory character. Logic precludes using intelligence to justify selfishness, or to equate the inimitable.

Mundane example: I recently mentioned to someone that there’ve been times when I’ve gotten upset in the grocery store because of money issues. They were sympathetic but then added, “Then, once you have enough money, you might start to feel guilty about having more than others, or have a hard time choosing what to buy!”

Um…no? Not. Equivalent.

It seems...logical to assume that if one has more than one needs one should do something about that rather than "feeling guilty;" and that the luxury of choice is a gift, not a burden (and, if the latter [?], not one that should be publicly bemoaned).

When A and I sit around discussing --  and, okay, sometimes bemoaning --  our situations, I know she, as a single mother, has it harder than me. We both know if we were Black or transgendered or more differently-abled than we are (or any of the other ridiculous things that can label one around here and make one, therefore, to some, “less-than” or “weird” or “automatically criminal and/or stupid and/or degenerate and/or inferior and/or, at the very least, suspect” in ways that limit opportunities and inclusion) it would be harder. That’s just logical! I think I have said this before: the only people who ever say stuff like “it’s all relative” are those privileged enough to have that belief and clueless enough to express it.  Most of us know better – and we’ve learned the hard way.

I make this point not to punish all the annoying people who think they have it sooo hard and don’t. What I want to do is draw a link to the sorts of persistent economic and social injustices that are fundamentally grounded in these types of self-rationalization – and that are typically unavailable to deeply logical people, including many on the autism spectrum.

Logical people just can’t get around numbers. If Person A has a salary of $200,000 and their “lifestyle” demands a new car every year and Person A is not logical, Person A can say to herself, “I need this new $30,000 car,” with no qualms whatsoever about those in need, such as, say, Person B, who makes $10,000 a year and is struggling to feed her family and has a car that barely functions. Person A can tell Person B, “It’s all relative.” But Person B, if she is logical, logically knows this is not true: A working car is a working car. $1=$1. $30,000 can feed four families for a year.

…Logic.

I like to believe that a logical Person B, if she somehow secured a job making $200,000 a year, and was in the same situation as Person A, above, would use that $30,000 to help those in need rather than to buy a new car because it is reasonably the right thing to do. A and I sure would. We don't just bemoan. We also plan for the day when we will be better able to help others. Those are our Special Fantasies. 

…Logic,logic, logic.

Truly logical people cannot ignore the fact that torture is torture:

When Dick Cheney calls torture ‘enhanced interrogation,’ it doesn’t make us understand torture in a different way; it’s just a means for those who know they’re doing something wrong to find a phrase that doesn’t immediately acknowledge the wrongdoing…
Whatever name Cheney’s men gave torture, they knew what it was. A grotesque euphemism is offensive exactly because we recognize perfectly the mismatch between the word and its referent. It’s an instrument of evasion, like a speeding getaway car, not an instrument of unconsciousness, like a blackjack.
Word Magic,” by Adam Gopnik in The New Yorker 

Ostensibly, the more logical you are, the more you recognize this sort of internal, mutual and/or institutional subterfuge; ideally – and in fact – logic thus makes one less prone to evasion, rationalization, justification….

Truly logical people know, logically, that there is plenty for ALL on this planet, if we omit greed on the micro (personal wealth hoarded and/or spent on thing after thing) and macro (nationalism, imperialism, huge corporations oriented primarily toward profit) levels. I am aware that’s not going to happen right this very minute – tho A and I wish it would! – but what if, bit by bit, people and institutions became more logical, and thereby more justice-oriented? What if empathy was linked primarily to real-life actions and choices that actually promote justice (rather than to a nice-seeming attitude)?
  
It makes me bonkers when allistic people assume that autistic people lack empathy. Here’s just ONE reason why:  for many of us, logic is linked to empathy as a value that must be enacted, rather than as a feeling that may be ignored – or rationalized away. Some people on the spectrum may seem self-centered, focused on their Special Interests and/or socially inept, but their literality and logical-tendencies typically make them among the most fair, just, unselfish, empathetic people around.

Love,
Full Spectrum Mama

P.S. This is the Second NEURO-MOMENT. Read the first here