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!

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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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IS IT SHOWING?

Dear Persons,

In IS IT TOUCHING?, I explored how the traditional view of sensitivity is limited --and somewhat discriminatory toward highly sensitive people and people with sensory processing differences (SPD).  I meant to put forth the idea that the way we perceive and process things should be recognized as a sort of neurological/physical/emotional/temperamental spectrum. Simply put, we have widely divergent levels of physical and emotional sensitivity. Furthermore, as self-advocates and advocates for our children and loved ones, it is up to us to decide whether our sensory (I include emotions as feelings here) processing differences are problematic, or glorious, or both, or neither...

This post was one of my most-read ever, and elicited many responses, both public and private.

One interesting theme that emerged from these conversations was that of EXPRESSION. I heard from people who have incredibly strong sensory and/or emotional feelings – but hardly express them at all. And I heard from people who feel they are “all over the place” in a sort of hot mess way and want to calm their actions, reactions and attitudes down (here is where some calming sensory activities might come in handy!). I heard from parents with super-sensitive, expressive children whom they are trying to understand...In short, it emerged that what we show (in those actions, reactions, and attitudes) is not just an exact reflection of what we feel.

So, this month, I’d like to bring your attention to the possibility that sensitivity does not correlate directly or evenly with expression or external reactivity. Some people develop coping mechanisms to hamper their reactions because of cultural or familial pressures. Some are naturally less expressive. Some people stuff their feelings. Others let it all hang out, sometimes in spades – intentionally, or because they cannot suppress the expression of their reactions.

Another manifestation of the sensitivity/expression interplay may be seen in those of us with sensory processing differences where certain stimuli that might seem minor to others (tags on clothing, bright lights, strong tastes or textures in food, temperature variations...) are interpreted by the brain as major. This may then result, expression-wise, in sensory overload or “acting out” or “shutting down” or...

At the extremes, you get people who may appear histrionic – your drama kings and queens who scream when stepping into a puddle of water (guilty) or a person gives them side eye; or your heartless stoics, who don’t even flinch when a finger is cut off or a loved one dies.

Notably, the histrionics and the stoicism may reflect/express SIMILAR levels of sensitivity, exteriorized in different ways. What we are experiencing inside is not always expressed in ways that exactly match our inner experience of intensity. People can be low on the sensitivity scale, but high on the expression scale; or they may feel deeply, yet not be expressive of that externally...

We may feel or express less – the proverbial “stone;” we may feel or express more, experiencing or acting explosively, like “fireworks.” These two things – what we feel and what we show - don’t usually occur in a matchy-matchy fashion.

What’s more, sensitivity itself can be emotional, physical, neurological...; while expression can be through actions, words, attitudes, moods...AND, as this scale shows, these factors can intersect in a Full Spectrum of ways!

Figure I – Showing Chart: Sensitivity and Expression: Stone to Fireworks, Squared

In addition, our attempts to modulate our expression are not always in line with our intentions.

As I wrote in IS IT TOUCHING?, I am a total sap and literally – embarrassingly! -  unable to not cry under a variety of circumstances, from funerals and other clearly sad occasions to anything touching (try this for a tear test), sentimental, or even joyous.

On the other hand, things that move me powerfully but are hurtful, complicated, or angering can overwhelm me and cause me to shut down and seem withdrawn or even cause a meltdown (internally!). And I am just one feeling/expressing person, a fraction of my Full Spectrum family. I am still trying to figure out my son, who sometimes can appear extremely insensitive as a reaction to sensory overload; my daughter, who seems impervious to all but a very few extremely, tremendously sensitive areas; and Pardner, who has the rare gift of being sensitive but non-reactive, observant and caring, yet as steady as can be. But Pardner has his areas of sensitivity, too: do not put your bike up against his car, nor, if you are a child with potential child gore on your hands, or a hairy cat in your arms, should you “touch the threads.”

So, finally, our sensitivities and expressions thereof can also vary from experience to experience, with different situations being more or less

Manageable/controllable,

moving/touching/intense,

and/or expressed

!

In the neurodiverse world, terms like “over-responder” and “under-responder” get thrown around, as if there is a mean level of response that is correct. Add on different ideas about social cues and behavior, reactions that may be judged “inappropriate,” or “unexpected”...Whew. I’m looking to expand our perspective on what’s a natural part of the range of human being, not criticize people. Human sensitivity and expression weave together in diverse, complex and fascinating ways, in a dynamic matrix represented here by a spectrum from stones to fireworks.  

What holds for all of us is that we want to be our healthiest selves. We have the privilege and responsibility of figuring out what that means - for our children, for ourselves, for our communities.

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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FIRST STEPS: UNDERSTANDING AUTISM

I edited this book, and I'm proud, but I already got paid -- so I'm just purely wanting to share a fantastic introductory book for those of you who'd like to learn some basics around autism - or who have people you'd like to enlighten:

You can purchase this book HERE. 

The author is a neurodiverse person with neurodiverse children, and her perspective is inclusive and wise. She's also written a memoir, which I've just begun to read and am enjoying immensely; I am especially relating to what it feels like to grow up "different" and raise kids who are "different," too. As she notes, so much work on autism comes from allistic people, and there's much to be said for work on neurodiversity from neurodiverse perspectives! 
  

Love,

Full Spectrum Mama

PROSOPAG-WHAT-Y-WHO????

Prosopagnosia! Prosopagnosia is one manifestation of Sensory Processing Differences wherein your brain doesn’t process faces in the standard way. It’s also known as face-blindness. And both G and I have it.

I didn’t realize how severe my prosopagnosia was until I moved to Vermont. Living in this state is harder for me, recognition-wise, for two reasons. First, the population is almost entirely white. Living in New York City and other more diverse, generally urban environs most of my life enabled me to identify people partly by skin color and hair texture. Second, there was a style factor in these cities which is, shall we say, not so much in play here: flamboyance of dress is not as common in Vermont as I’d like it to be – and not just because I can’t tell anyone apart. As my dear friend Fern once said when we were in graduate school at Columbia University – an environs that felt to us downtown denizens like a bastion of preppiness in the midst of a then-freaky New York City -- “I feel like a drag queen here.” Come to think of it, we need more drag queens in Vermont, too!

ANYway, in a state where most people are white and dress casually, sportily. I find myself frequently faced with a friendly person who knows me, and expects me to know him or her. Which I probably do. But not by face.

Oh and another thing: small towns. In small towns you don’t just see someone where they work or attend a specific activity with you, where you naturally might develop contextual identification. No…in a small town, you also run into them and are expected to recognize them IN OTHER PLACES.

                                             Figure I – Basic Distinctions – Weak to Strong Recognition

                                                    Figure II – Bonus Distinctions – Strong Recognition

None of these observations – from skin color to hair length or texture or color to age to gender identity…--- is a judgment for G or me (well, maybe style -but I celebrate style diversity!). We are generally much too engaged in attempting to navigate this neurotypical world to feel critical of others’ looks. Visual differences (there are others uncatalogued here that may be helpful: moles, glasses, braces…) are just ways to recognize people.

Once I get to know someone well, I am able to recognize them…most of the time. Certainly close-up! This is not the case for all people with prosopagnosia, some of whom are never able to recognize even their closest associates. G has thought other women were me from time to time, and continues to do so; only when he gets right in front of them is he able to see that he was mistaken. Disconcerting – but I get it. In fact, it was through watching G have some pretty notable encounters of this sort that I began to realize that I had the same tendency. Before this dawning, I’d been prone to wondering why I could not distinguish between most of the mothers at drop off (or their kids, or who went with whom…), but I’d just put it in my “quirky me” category, with a side of “pathetic.” Around the same time, there was a great article in the New Yorker by Oliver Sacks ***http://www.newyorker.com/magazine/2010/08/30/face-blind*** on this very subject (which also goes into topographical agnosia – another form of visual agnosia [lit.: not-knowing] - that I also share, but, luckily, G does not), and I realized there was a name for what G and I were experiencing!

G realizes that he has this Sensory Processing Difference, and that it’s something I, too, deal with. He’s learned to check himself in this area, and he’ll often say, now, “…Is that? …No.” He’s become more careful over time of calling out to his peers unless he’s sure it’s the person he thinks it is, which, frequently, it is not.

As G grows, he will be able to develop tools for recognition and hone his skills in this area. As awareness grows, he’ll know his face-blindness is a sort of Sensory Processing Difference that is shared by many. He’ll figure out his own best Distinctions, recognition-wise – and never need to call himself “pathetic.”   

Love,

Full Spectrum Mama

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ARGHERS AND ACTIVISTS

Hello, my name is Full Spectrum Mama and I’m an Argher and an Activist.

I’ve been politicized by having “different” children, but I suppose I was pre-politicized by being “different” myself. In the family I grew up in…well, let’s not get into that. Let’s just say it took me a long time to realize that speaking up when something is wrong is not “having a victim mentality!” It’s about seeking justice. Speaking up does not make you the bad guy. It makes you an Argher and an Activist.

The “Argher” label arose when my Meeting Friend and I were commiserating over an injustice and I thanked her for the pleasure of feeling like we always understand each other and she replied, “I can argh with the best of them.”

Well, I appreciate that a great deal!

People with obvious differences from the “norm” and/or the majority  – those with visible physical differences, differences of demeanor, skin color differences, some trans people… – don’t have a choice about being noticed. Sometimes that “noticing” takes the form of bias, discrimination, bullying…

People who are activists for animal rights or political justice or against other injustices may be activists for causes that are urgent, but they have a choice.

In any case, there IS injustice in the world.

Sometimes what we need when life deals injustice is someone to say “Argh!” with us. And that can be enough. Actually, we almost always need a fellow Argher -- at the very least to understand and empathize.

There are several sorts of Arghers:

            The CO-Argher, who shares your situation;

            The WITH-Argher, who just completely Gets your situation;

            The GENERAL-Argher, who is compassionate in every way…

…We will not deign to discuss the ANTI-Arghing-Argher, who wants the other Arghers to can it, pronto.

Our fellow Arghers make life bearable when something feels very wrong. But, often, we need more. The “Activist” label arose for me when stupid stuff happened & I chose to call people & institutions out on their discriminatory behavior. Activists seek to be catalysts for change, because the status quo is often unacceptable.

Arghing is private, but Activism is public and often elicits resentment. People generally want Activists to keep quiet and go away so that they don’t have to be inconvenienced by accommodating the equality of ALL.

So—rry.

Activists may be sorted into similar categories:

The CO-Activist, who shares your cause (just about everyone I know who has a “different” child has been shunted into Arghing and/or Activism. As a parent, one basically has no choice);

            The WITH-Activist, who just completely Gets your cause and supports it;

            The GENERAL-Activist, who is justice-oriented in every way;

The ANTI-Activist, who finds Activists burdensome and pesky.

Liminal people – minorities, people with differences, etc. – often have way more encounters with neurotypical, gender, economic, racial, normative or other privilege. If a given liminal individual (or their parent or partner or other loved one) is strong/brave/privileged/foolhardy enough, he or she may choose to speak up about injustice.

For many reasons, however, we don’t always say something, whether through public Activism or private Arghing. Some of us are non-verbal, some of us are shy, some of us are scared, some of us are tired, some of us are cynical, some are resigned…

We DO always feel it, though; of that you may be sure.

What happens, then, is that those of us who by virtue of our own and/or our children’s and/or our loved one’s differences see more injustice and choose to address it sometimes find ourselves in these positions:

“rebellious” people of color,

“uppity” women,

“whiney” people in poverty,

“annoying” disabled people,

“shrill” queers…

A.k.a., Arghers and, perhaps, Activists!

The funny thing, vis-à-vis the people who resent Activism, is that the kinds of Arghing and Activising that I am talking about are long-term beneficial to ALL. Sure, it might take some stretching on the parts of certain individuals and institutions. The “privileges” of inequality from which some benefit (and others suffer) may be hard to relinquish, but I cannot hope but believe the rewards would be more than commensurate. Truly, what do we ultimately have to lose by being more inclusive as individuals and communities??

Ideally, as painful as they are, these experiences of talking about and struggling with and negotiating over and even experiencing injustice make us more fully human, more empathetic to others.  Once we have experienced injustice, we don’t want ANYONE to suffer.

Take, for example, Hedy Epstein, the 90-year-oldholocaust survivor arrested for protesting against institutionalized racism and violence in Ferguson, Missouri last month. My instant take on hearing about her was: OF COURSE: She has experienced and recognizes injustice…She cannot stay silent, having once escaped being permanently silenced.

She, too, is an Argher and an Activist.

We can be proud to share her proclivities!

Love,

Full Spectrum Mama, A. & A.

THE HEAT PLUS THE FEELING

After reading my last Sensory Blog Hop post, Whistle Nose, our friend Noodle Ayi (Auntie Noodle) talked about how part of having a hard time naming and interpreting emotions (Alexithymia) is also related to not knowing how emotions feel in our bodies.

Huh? Hadn’t even thought about that! For the Full Spectrums who are on the Autism end of our spectrum, both of whom have Sensory Processing Differences, knowing how an emotion feels in our body AND having a feeling at the same time AND functioning will be a lifelong project.

Here’s a recent example: G’s Graduation from 6^th Grade, about which I’d been very apprehensive, primarily because I thought I would humiliate him with my sentimental sobbing. What actually happened was VERY Sensory, but also unexpected.

G cried, ceaselessly through his entire graduation ceremony. Big blubbery tears, shaking, trying to stop, humiliated, heaving, producing copious liquid from nose and eyes.…on the stage.

Figure I- G: SPD/ASD Child: 

Heat Plus Feelings (Crying) Equals Full Brain

To stop crying would have taken some extra capacity he simply did not have, what with the Heat and the Crying/Feelings.

Z – our resident Neurotypical, who’s also on the no-nonsense end of the spectrum -- asked, repeatedly, “Why is he crying?” Not so much with scorn but sheer bewilderment.

I didn’t cry at all.

Figure II – FSM: SPD/ASD Mother: Heat Plus Feelings (Psychicly Messaging G to Try to Stop Crying Plus, Especially, to Stop Overtly Wiping Giant Gobs of Snot on His Arm) Equals Full Brain

To cry would have taken some extra capacity I just didn’t have, what with the Heat and the Sweetie-Can-You-Stop Feelings. 

All my energy was channeled into trying to get him to calm down and breathe – complete with “useful” facial cues – and to stop, just - PLEASE, for your own sake son! -- with the snot.

So many adults came up to me afterwards and said how touching his crying was, one spoke of his “pure heart,” but I know he felt terrible. It couldn’t have been a big status-builder with his peers.

G’s an old sap from a long line of softhearted saps, and this event was overwhelming on a myriad of levels. Being hyper-empathetic, I think he was feeling and expressing what so many in that room were feeling and not expressing. And it was a huge year for him, finally feeling like he belonged, in unprecedented ways.

Most of all, the heat in that room was so overwhelming that for both of us it was almost impossible to function. I am sure it was awful for everybody, no question, but with Sensory Processing Differences the brain simply cannot prioritize in the “normal” way.

Heat plus another thing? That is IT.

Then G got REALLY SICK. Fever, nausea…I think the latter might have had to do with his eating four desserts during the “refreshments” part, but I genuinely think the fever was his feelings in his body. This scared me, because I, too, get my feelings in my body – and I ended up with rheumatoid arthritis, one of the few diseases known by western, mainstream medicine to be in many cases the result of trauma.

In these ways SPD is so closely linked to our emotions. If we can better process our feelings, we will be exponentially healthier – body and mind.

But if you take even just this one little scenario, Heat plus Tears or Not-Tears were maximum-capacity situations for us. Noodle Ayi’s sage thoughts around figuring out how emotions feel in our bodies were one order above where we sat, blubbering and not blubbering, in that hot room.

There was no

“how does my body feel right now?”

never mind

“what is this emotion my body is feeling?”

never, never mind

“I am feeling this way, which represents…”

For some people with Sensory Processing Differences, even ONE of those factors might be enough, as in: Heat = Full Brain = Go Home, or Big Feeling = Full Brain = Tantrum.

So you can see where it might be nice to have strategies to manage all sorts of scenarios involving, oh, life. It could be extremely helpful to be able to use another tool to discern how we are feeling, from the way our bodies are feeling.

The first step for our Full Spectrum family, though, has been to acknowledge and begin to understand how we process experiences in ways we could not fathom before knowing we had Sensory Processing Differences.

I’m feeling….hopeful?

Love,

Full Spectrum Mama

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