NOT A DISEASE

Dear Persons,

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

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THE LINGO

Dear Persons,

A good friend texted me the other day to say her son had called someone a “midget” and that didn’t seem right to her. Did I know a better word? I didn’t, actually. I wrote back:

Oh dear. With these things I think the Most important thing is what the person him or her or their self wants to be called…Person-first language was/is a trend (person with autism, person with dwarfism...), but that hasn't entirely worked out either. I've heard "small person," but - ? Complicated. Pretty sure “midget” not good tho...

Have you read Americanah by Chimamanda Ngozi Adichie?

The startling revelation in this book, for most people, is that being black is a thing in the United States in a way that it is not in Nigeria…We grapple with race in this country in ways that some other countries don’t, because of our terrible history of slavery, because of demographics, because of ongoing racism…In other places, other characteristics separate or unite people! Sometimes communities even form over shared differences - neighborhoods or meetings where people share certain qualities that may alienate them in the mainstream of a  given context. 

Being different is an issue only because, while we all live in somewhat diverse environments,  there are in every environment traits that most people share or that are considered “the norm,” such as heterosexuality, “typical” neurology, “white” skin, “black” skin, cys-gender identity, biological-family formation, “typical”family structure, “typical” ability, shared nationality, and so on…

This is changing. 

I see people noticing how random and inherently unimportant such aspects of people are; I see people celebrating diversity; and I see people trying to approach differences with more sensitivity. 

Parents of children with differences or people with differences are sometimes seen as “experts” on difference, but mostly we are just used to being thoughtful about such things in ways that can be new to some.  

So here’s my main suggestion: ask. 

Ask people what they want to be called. 

If you can’t ask, do the research to figure out the most respectful way to say what needs to be said.

Mostly, just try to see people as whole people, rather than reflections of a particular aspect of their being. 

Thanks and love,

Full Spectrum Mama

P.S. Even “Voices of Special Needs” might be taken as offensive by some: who is speaking for whom, and why are these needs “special?” As a neurodiverse person and a member of a family formed by adoption, I speak out about these topics as someone who is fundamentally enmeshed in such identities and speaking from personal experience only; I share our experiences in the interest of spreading understanding and awareness and inclusion. 

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

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FULL FRONTAL - A NEURO-MOMENT

“You need to be your teens’ ‘frontal lobes’ until their brains are fully wired.”

Dear Persons,

  

I found this quote, from The Teenage Brain by Frances Jensen, in an 8/31/15 New Yorker article, “The Terrible Teens: What’s wrong with them?” by the highly-respected Elizabeth Kolbert (all following quotes are from this article unless otherwise specified). Kolbert usually writes searing, devastating pieces on global warming and the environment, but apparently she’s also the mother of three teenage sons, and so had a personal interest in this subject as well. Frances Jensen is herself “a mother, an author, and a neurologist,” who has two sons who have now graduated from their respective (very good) colleges. We will leave aside the question of how these two mothers are so incredibly accomplished, naturally doing so in a totally unbitter way, and now proceed to discuss how and why something is “wrong” with teenage brains.

...Something is wrong with teenage brains. And what that is, is: teens are not yet fully-brained.

This is news?

Even Aristotle (~384-322 BCE) felt that the young are lacking wisdom or even the capacity for reason. In his Nichomachean Ethics, he wrote that youth are so “inexperienced,” and “tend[ing] to follow his [sic] passions” that “studying [here, reason and philosophy] will be vain and unprofitable.”

But Kolbert, Jensen, et al bring the science: Apparently, everything we think of as mature, wise, balanced, reasonable, “civilized, intelligent,” comes from our frontal and prefrontal lobes. Since brain development has been determined to start in the rear sections of the brain and move forward, these areas are the very last to mature. In fact, according to MIT.edu and many other sources, full brain maturity may not occur until far into the 20s, usually around 25 years of age. The BBC News, among others, extends this into the early 30s.

In teens, the frontal and prefrontal lobes of the brain are not yet completely integrated or connected with other more impulsive or pleasure-oriented parts of brain, the latter of which are in fullest-ever force during these years. Usually, in full-brainers such as ourselves, the frontal and prefrontal lobes will “check on impulses originating in other parts of the brain.” For teens, who are still developing those links, checks and balances are rare to nonexistent. Since these front bits of the brain are also the seat of executive function – “responsible for planning, for self-awareness, and for judgment”—organization and follow-through are also at a low point.

Now imagine all of this plus atypical neurological development. In certain ways, aspects of autism and other neurodiverse ways of being such as ADHD, may resemble - or partially overlap with - or exacerbate! - the typical teenage brain.

What I really, really want to know is: Does this mean my son may actually someday develop some sense? I do and will celebrate all of his other quirkinesses and differences, but the sheer dangerousness of his unique developmental status in this area, combined with the natural teen/20s[/30s] propensity toward rash, foolish, irresponsible behavior, is alarming. At some point, he needs - for his own safety and independence - to somehow make, integrate, and strengthen those neural connections.

In any case, allistic or neurodiverse, teens also quite blatantly lack some of the central capacities we regard as integral to prudent, productive, safe human existence.

As solutions, Jensen and Kolbert recommend the following hi-tech tools:

            * “near constant hectoring,”

            * “scare tactics:” telling terrible cautionary tales at every opportunity, and

* calling other parents to make sure your teens are never alone at their houses, either (representative teen quote following this strategy: “Why even have kids if you are going to do that?”),

...in order to:

* force our kids into faking or parroting some modicum of executive function, responsibility, and do-right,

* supervise teens’ every move, since they are personally incapable of judgment, and, most importantly, to,

* frighten our kids into not doing all the stupid things they are naturally prone to doing.

Count me in: I never thought I would be this kind of parent but, given what I’ve learned and experienced so far, I agree with them on every level. They admit, however – and I agree with this, too - that not only were/are their teens’ immediate responses “not always encouraging,” but that there is “no empirical evidence” that any of this works.

Nonetheless, it’s all we’ve got. So, for the next 8-20 years, you may call me “Full Frontal Mama.”

Love,

Full Spectrum Mama

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. 

“HURTASELF AGAIN!”

Every time we have a Silent Contest (a.k.a. “Mom’s only time to not hear talking all day”), G brings up the time his sister and cousin stole his french fries at a diner with his Full Spectrum Grandparents. Apparently, he’d been trying to win $2 in a table-wide Silent Contest (apparently, grandparents also like quiet moments), and was unable to protest the theft because of the need to be Silent.

So, naturally, he’d prefer NOT to have a Silent Contest, because he is still traumatized by The Incident. Which happened at least four years ago.

I tell this story because, well, I get it. Some of us with sensory processing differences are extremely sensitive emotionally as well as sensorially. And – whether through our senses or emotions – when we feel things, we feel them more deeply and intensely than the average person, so that sometimes they are unbearable…and sometimes they are unforgettable.

I think of it like grooves on a record (remember those? C’mon hipsters!): the original grooves are deeper, as they are more strongly felt; the grooves that remain over time are worn away more slowly, if at all, because of their original depth. Literally, though, it’s the neural connections experiencing and recalling these feelings/events that are more robust. This might account at least partially for G’s and my eidetic memories, with which we are able to visually recall whole swathes of text or things we’ve seen or heard (transformed into text, for me).

At the same time, the processing and memory space taken up by these strong feelings seems to preclude the remembering of – or paying attention to - whole other piles of things. We may seem flaky, or physically uncomfortable, or socially awkward. We may get lost – directionally or in other ways. Sorry!  Brain full!

When I was a little girl, every time I would get hurt I would say, “Hurtaself…AGAIN!” Even then, I associated pain with previous pain, and strongly recalled other injuries, because they really, really hurt. (I remember{ed} the good stuff too – that’s now one reason I remember to write thank-you notes! – but that’s another story.)

                    Figure I – “Hurtaself again,” Adult Stubbed Toe Example

Think I’m being dramatic? Last year I had one of those cavities where you chew the wrong way and you fall down in agony before even having the time to think about it. I went to a local dentist and he could not numb the tooth. I went to an Ivy-affiliated dentist several hours away who was likewise unable to numb the tooth. The fancy dentist told me my tooth was “enervated,” meaning that the nerves associated with the tooth were many and widely dispersed and thus it was impossible to eradicate the feeling in that tooth. I would need to go under general anesthesia to get this tooth fixed (both dentists were able to put temporary “band-aids” on the tooth). 

Enervated. In general terms it means to make weak or lessen someone. But in teeth it results in Feeling More. That sounds about right for just about everything in SPD land.

Love,

Full Spectrum Mama

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