Thursday, July 23, 2015

Reclaiming the Dignity Lost In A Diagnosis

by Cas Faulds

As an autistic person, I have multiple facets to my identity – just like everyone does.   One of those facets is that I am also a parent.   My son is autistic, and I know what it is like to sit with professionals and be told how limited your child is.  I know what it is like to receive a diagnostic report that includes horribly negative words about deficits, and I know what it is like to have to explain that to other people in your child’s life including teachers and family members.

So, based on that, I would like to offer some advice to parents who have gone through this process that I wish someone had given me when I was there.

Take the diagnostic report, full of the language of the pathology paradigm, and reword it to reflect the neurodiversity paradigm.

How?

The best way that I can explain this is to give you an example:

From a report:

X appears to have impairments in communication and social interactions.  In addition, he was reported to have several restricted and repetitive behaviors.  Specifically, he was noted to have difficulties engaging in a social conversation, high pitched vocal tone, impairments in use of eye contact, difficulties socializing and interacting with other children, and limited emotional reciprocity.  He also collects rocks, has an inflexible adherence to routines, displays heightened sensitivities to light and loud noises, and finds it hard to cope with changes to his daily routine.

No, that doesn’t say anything positive at all!

So, how can I reword this to say something positive?

X has differences in his communication style and social interactions.  He prefers to engage in behaviors that are comfortable for him.  Specifically, these include conversations that remain on topic and relevant to him.  He prefers not to make eye contact because it is uncomfortable for him, and he prefers interacting with children who are older or younger than him, rather than only interacting with his age mates who can be less predictable.  He loves collecting rocks because he is interested in the different shapes and substances that rocks are composed of.  X prefers predictability in his daily routine, and enjoys being in sensory friendly environments.

Why?

Why should you do this?  Why go to the effort of rewriting a professional report?  Because you are going to have to introduce your child to teachers and therapists and you’re going to have to do that more than once.  When you do, you want to do that from a place of strength rather than a place of weakness.  You want to highlight your child’s unique potential rather than place limitations on them, and you don’t want to have to confront all those negative words every time you do this.  This way, you have the words you need to ensure that your child receives the support that he/she needs without trading in his/her dignity.

As an autistic person, I wish that my parents had accepted me for being me, rather than trying so hard to make me into their version of me.  Their efforts to make me into their version of me were unsuccessful but it did result in me feeling as though there were things wrong with me.  For my son, I want him to be able to be him, without having other people give him the message that there is something wrong with him.  This way of introducing him to people who will work with him sets the tone from the beginning that you value I value my son for exactly who he is and I will not allow them to try to change him.

Monday, June 1, 2015

On Verbal Speech

By Kit Mead


I worry about being taken seriously if I write about certain things non-anonymously. Today I decided to write about them. Verbal speech tends to be a pre-requisite of society, and what would people say outside the disabled community if they read this and know that speech isn't all that great for me?

Anyone who has seen me talk out loud knows speech is not, perhaps, my first language. My first language was writing cat stories about a fictionalized version of my first kitten, Tabby, lost in a world of written words. I was in third grade and this is what I liked to do: Write and write and write.

My speech works best when I can read off my laptop, or if I've typed it out in advance. It's why my conversations with friends about activism tend to be with my laptop open. I'm telling them about the posts I already wrote and quoting, and also paraphrasing with words that make me sound slightly angry. I don't have the access to prettier out-loud language.

Okay, sometimes I actually am angry, but usually not as angry as I sound out loud.

Someone once told me I was more expressive than this other autistic person they knew. I wish they knew that my real words come down on paper or Word documents. They spill out faster and with more clarity there than I could hope to achieve out loud unless I have prepared over and over again in advance.

And I don't want to prepare over and over in advance unless I'm actually giving a presentation. Because I need people to accept me with my slightly stop-and-go conversations with words hacked into pieces and sometimes losing their meaning. I need people to know that I don't always mean what I say because I can't always have words out loud.

Tuesday, March 17, 2015

On Being An Unexpected Kinesthetic Learner

I start to rediscover that I’m a kinesthetic learner, and it’s odd.  It’s so contrary to everything I’ve ever been told about myself, and it feels so good.

When we started learning about multiple intelligences theories, kids who were described as kinesthetic—as learning most naturally through movement or action—were dancers, naturally talented athletes, the class clowns, physical actors, the kids who could never sit still.  Kids who were always in trouble for not being able to stay in their seats, likely to pick up a diagnosis of ADHD somewhere along the way.  High-energy, daring, uninhibited, and loud.

And I was very quiet, very still, very inhibited.  I was always in trouble in PE for not knowing what in the world I was doing or being totally unable to keep up with the rest of the class.  I was badly coordinated and nowhere near fast enough for any team sport.  I never placed in any event in Field Day.  I failed out of gymnastics.

Kinesthetic learners were generally thought not to do well in school because of their need for activity and movement.  I sat quietly in class and got all A’s. I had a photographic memory.  Teachers were always scolding, “You can’t expect to only study the night before and do well on this test!”  But I could.  I got into the gifted class and kept my hands rolled up in my sleeves.

But all the while, I just ached to be taught how to do things.  I clawed my skin off from having not enough to do with my hands.  And I could feel the terrifying void that existed between the fact that I knew about a lot of things, but I didn’t know how to do almost anything.  The scrutiny of other people was literally paralyzing.  I resented more than anything as a kid when we’d be told that we were going to learn how to do a really cool thing, but then what we actually got was obviously a fake, dumbed-down version, of making gingerbread houses or uncovering fossils.  People told me a lot about how I was never going to make it in the real world, but nobody seemed to want to teach me anything real.

But writing is movement, too, and I was better at that than most people.  So is beading.  So is loading electrophoresis gels, and my biology classmates marveled at my dexterity at that.  

As a child, making tuna salad or cutting up fruit for myself, people try to take knives away from me, sure that I’m going to cut myself, but I never do.  (They do.)  I never fall on steep hills or icy sidewalks when adults are sure I will.  I never sprain an ankle toe-walking.

I could feel that if I could know a thing in my body, in my joints, in my bones, in how it behaved in my hands…anything I could make a physical habit out of, was a thing I’d always be able to do, that I could never really lose or forget, the way I’ve forgotten calculus almost entirely from disuse, and chemistry, and how I’ve lost my photographic memory to other cognitive demands.  (That one makes me mad.)

I start stealing opportunities to do that.  Time without a well-meaning adult hovering over my shoulder was time to steal fire.

We have typing class in 9th grade, and once I start learning, my fingers twitch constantly, ghost-typing out any sequences of overheard words against my thigh.  I had no idea what was wrong with me, why I couldn’t stop.

I was in high school, and may’ve been listening to a lecture from my grandfather about the difference between people who work with their minds and people who work with their hands, and thought silently, “If I don’t work with my hands, I’ll go insane.”

My acting teacher tells me to get my hands out of my sleeves.  I turn out to be good at acting.

At a new job, I initially panic when I learn that my nightly duties will involve moving pianos by myself.  But I quickly get a sense of the individual moods and idiosyncracies of the Hamburg, the New York Steinway, the Fazioli—their resistance and center of gravity.  They almost have individual wills, like baby elephants.

I get told at a meet-up that I have very loud hands, and it makes me so happy.


I start teaching myself a little ASL to make up for the apocryphal childhood gesture language I was trained out of, that I have no conscious memory of, and it feels like breathing air instead of doing complicated sorcery.

Tuesday, February 3, 2015

Do You Believe In Your Children?


Sometimes a parent of an Autistic child will dismiss what I have to say about autism. One would think that 47 years of living Autistic would give me some measure of insight, but they say, "you're not like my child. You are so high functioning. You drive a car. You have university degrees. You write so clearly and articulately. My child's autism is severe. My child will never do those things. You're so functional, I can't even think of you as having autism at all."

I've written a fair bit about how painful those kinds of statements are to me. I've talked about how dismissive it is of me, my experiences, my struggles, my failings and my accomplishments. Telling me I'm "not impaired enough" to even call myself autistic reduces me to a static snapshot of this moment in time -- worse, of someone else's perception of this moment in time. There is so much of me they cannot see in plain text on the internet. They have looked at one facet of me -- my facility with written communication -- and reduced my entire being to that single detail.

But today I want to talk about how harmful those statements are to someone else. Yes, they are insensitive and hurtful to me, but what is infinitely more important is that they are damaging to the child to whom I am being compared.

A child -- any child, not just an Autistic one -- is a work in progress. By this I don't mean that they are a someday-person. Every child is real and authentic and fully human in this moment, perfect just as they are. But they are also a sort of seed of the adult they will hopefully grow to become. And, to extend this analogy, think for a moment about how plants grow. If you could only see the seeds and bulbs and spores and had no idea what plants they would become, wouldn't you think an iris bulb held so much more growth potential than a sunflower seed? Yet, given time, the sunflower will tower high above the iris blossom. Tiny acorns grow into massive oaks, but before oak trees scrape the sky, that even smaller bit of dandelion fluff will take over the entire meadow, filling it with sunny yellow flowers.

The seed is not the plant. The child is not the adult. And children are such mysteries when compared to seeds. The experienced gardener knows how much harvest she will reap from a row of radish seeds, provided no accidents such as drought occur. A parent can give birth to a dozen children and still only have rough ideas of how that twelfth child will turn out, given no accidents that sway the course of the child's growth or cut it tragically short. Parents see things, many things, but not everything.

My sister (who happens to not be Autistic) was very gifted with mathematics in her teens. There came a point, in middle school, when my father could no longer help her solve problems, despite his degrees in chemical engineering. My sister was calculating problems involving things such as trains traveling through spiral tunnels. It seemed obvious to all of us in the family that she was destined to be a scientist or mathematician when she grew up. Her aptitude in the STEM fields was tremendous.

Imagine my parents' shock when my sister declared art history as her major in university. She went on to work for a non-profit protecting historical architecture before marrying and becoming a stay-at-home mom to two delightful little girls. She was an acorn that grew into a daffodil! I say that not to devalue what she has done. Hers is a well-lived and splendid life and daffodils have intrinsic value. But they are a shock when one expects an oak.

Children are unpredictable. Their life trajectories are hugely unpredictable. And, in many ways, Autistic children are even more so. Although I believe that autism is nothing new and Autistic people have always been among us (though unrecognized and called by other names) a clear understanding of what autism is and what the autistic lifespan looks like is still to come. These are uncharted paths that are in the process of being discovered by researchers, by parents, by Autistic people ourselves.

So . . . what is it that you are actually saying when you look at my life and say that I am not like your child?

In a very real sense, you are saying that you don't believe in your child. You are saying that your child cannot grow to be what I am, do what I have done. You are signing off on a package that has not been delivered yet. You are dismissing your child's potential for amazing growth and change. You are not just reducing me to a static snapshot. You are doing the same to your child.

Maybe you look at me driving long distances and then look at your 16-year-old who wants to drive but is not ready yet. You don't see that I was not ready to drive at age 16, either. I didn't get my license to drive until I was 25 years old. And even then, I was shaky and unsure whether I was making a wise decision or not.

Maybe you look at me writing detailed descriptions of my inner thoughts and understanding and then look at your 14-year-old who is writing surface descriptions of things and can't even explain why she does the things she does. You don't see that I was not able to begin to explain my actions or seek help for internal suffering until my twenties -- and not really in any meaningful way until my thirties. You see my blossoms and don't recognize that they are late blooms.

Maybe you look at me sitting in university lectures and passing exams and making the dean's list and then look at your 7-year-old who needs a one-on-one aide to be allowed to stay in a classroom at all. You don't see that I was hiding under the table and biting people in my first grade class and the teacher protested until I was removed from her classroom. I was still quicker with blows and bites than words at age 15. It has taken a long time and a lot of work to become a person who can deal with stress and conflict without exploding and lashing out. I dropped out of high school. I tried university at age 22 and had to drop out. I got my first university degree at age 40. I dropped out of graduate school. My trajectory has been anything but smooth.

So if you really do think that I'm not like your child, you should stop and remember that I am decades older than your child. And you should stop and ask yourself why it upsets you that I do think I am like your child.

I think I am like your child because I can see a kindred spirit in your child and because a doctor put the same word, autism, on my different way of interacting with the world as a doctor put on your child's ways. I think I am like your child because when I look at your beautiful child, I see a person but also a seed of the person to come after. I see potential in your child and I think it is magical and wonderful that your child is still being formed -- still forming herself. I see a million different paths your child's life could travel down and it is mysterious and I feel like holding my breath as I watch her grow.

If you think I am not like your child, I ask you: do you believe in your child? Do you leave the possibilities open? Do you nurture your child so that he feels safe to grow into the adult he is germinating inside himself?

If you believe in your child and you believe in your child's possible futures, I ask that you also believe me when I say that I am like your child. I am like your child and I think she is wonderful beyond the telling. Please, will you believe in her wonder and possibilities, too?

Sunday, December 7, 2014

Ability is more than the sum of savant skills.

A lot of the time, when I ask parents and teachers to consider a neurodiversity perspective of autism, or to look for what their children’s strengths may be and not only their deficits, people will retort, “My child doesn’t have any savant skills!”

And so I wanted to address the relationships between what we commonly think of as “savant skills,” and communication, expression, and the deficit model of autism.

Autism is commonly conceived of only as a set of serious deficits, except for when it confers spectacular, miraculous-seeming, but isolated savant abilities or splinter skills. 

This is a problem.

*

I was kind of already thinking about these things when I ran across this post, about splinter skills as simply very specialized expressions of things that are otherwise just called talents, and this paper, which describes savant skills as specific perceptual strengths for which the time and tools necessary for reinforcement are available.  (Note: the paper is in very dense, abstract, and academic language.  It's a rewarding article to read, but it is not written in accessible language.)

I’ve always presumed myself not to have a savant skill.  I certainly don’t have any of the stereotypical, conspicuous ones like card-counting, calendar calculation, or photorealistic drawing.  But I’m not totally sure anymore that’s true.  Or at least, what my actual core strength is, is fairly ultra-specific and manifests in a relatively narrow band of tasks.

And I think it’s something related to perception and filtering of information about time.  (How’s that for obscure and specific?)

This thing about timing is something I feel like I’ve always had as a primary perceptual bias. It’s an entirely non-verbal perception, and yet it can have expression in verbal contexts.

Whether or not I have any way to express it, on the other hand—to make it apparent as a strength at all—is incredibly context-specific.  That’s happened twice—in scholar bowl—where in my first student vs. faculty rounds in middle school, I was so fast at pulling answers about subjects I’d never studied out of thin air and hitting a buzzer that it had my teachers scrambling to discover how I was cheating.  And in stage management—what I now do for a living.

People are still surprised to hear that calling a show—that is, the act of reciting from a script all the light, sound, and entrance cues in a show so that they happen exactly when they should—is my favorite part, and the easiest part to me.  I was confused the first time I was asked in an interview, with some skepticism, whether I like calling shows.

I love it.  Nothing else feels so mentally close to flight.

And I was just good at those things, the first time.  I got even better with practice, but they were things that just intuitively clicked the first time I did them.  But I was fairly old before I had any way to demonstrate this as a pattern of skill, and even older before I had the language or pattern of experience to recognize and identify it for what it is.

The counterintuitive part is that even though it’s a strength, even though it’s an enhanced perception compared to what most people experience…it can also be disabling.  It’s intimately involved somehow with why speech and initialization of movement are difficult.  It’s related to why participating in group conversation is hard, because other people are using an entirely different set of cues to direct and understand the flow of conversation.

It’s a major source of anxiety, because this thing that my whole sense of the world is patterned on, is undermined and disrupted by most other people most of the time.  It’s part of what makes transitions so hard to navigate for the same reason.

It’s the very same trait that can be a strength or a disability depending on the context in which it occurs, and sometimes even both at once.  It’s the same trait that makes speech and gross motor planning hard, as makes me able to run a complicated show practically as easily as breathing, depending on my environment, the expectations of people around me, and the tools I have access to.

People who have a recognized savant ability or “splinter” skill are only the ones who have a readily available medium for it.

What’s most alarming to me is how dependent on access to technology and educational resources my chances of even getting to identify and make use of this have been.

If I hadn’t had the language capability I do, if I hadn’t been considered a gifted student, if my chances of going to college were undermined instead of supported, if I hadn’t had access to theatrical training—all of which could so easily have happened if I’d remained non-speaking.  Or if I’d even been diagnosed correctly.  I would likely have been denied access to the very resources that are most necessary to expression of my most central abilities, based only on prejudices about what my inabilities meant.  (Which weren’t not there anyway, they were just not acknowledged or presumed to be willful on my part.)

There is no reason why acknowledging disabilities, deficits, and need for supports should mean refusing to recognize strengths, or why recognizing strengths should mean refusing to cope with deficits.  Humans don’t have only intrinsic strengths or savant skills or disabilities.  Not only are none of those things mutually exclusive…they can actually be intimately related.

It positively frightens me to think about how many kids could be in a situation in which their strengths are denied because they don’t fit a limited stereotype of what “savant” abilities look like.  Where their families and teachers have been taught to see only grave deficits as consequences of autism.  Who haven’t been given any way to know or communicate what tools they need or what kind of environment would best allow them access to their abilities, which may not resemble what most people think abilities look like at all.

How many are being written off as being without abilities, even without awareness, because they don’t have the medium they need for expression?

When I ask “What are this kid’s strengths?” the answer may require looking for something that is also at the root of their disabilities.


I want to be totally clear:  I’m not saying that all autistic kids have some hidden, magical savant skill, but that people are in danger of having their abilities and competencies ignored when they don’t look like what people think savant skills look like, and believe that a limited repertoire of savant skills are the only true abilities that an autistic person could have.

[Image is of a Clear-Com headset sitting on top of a stage manager's calling script, with lots of cues and timing notes written in.]

Wednesday, October 29, 2014

Small things matter: hunger, meltdowns, and coping skills

By Aiyana Bailin

Let me preface this by saying that I don't have a formal ASD diagnosis (just various mental illness labels), and am unsure whether or not I'd qualify for one. What I can say is that, throughout my life, I have had various small but very significant gaps in what is considered "normal" functioning for someone of my age group. Many of them are common among autistic people. Some of them were easily overcome or managed, others not so much.

I want to talk here about one that caused me quite a bit of grief before I learned how to cope with it, but which was actually quite easily accommodated once I understood it.

I'll begin by noting that I struggle with eating sometimes. My appetite varies wildly according to numerous factors from stress level to time of the month, and I can easily forget to eat altogether for the better part of a day, or more. I've been known to faint before realizing I was hungry.

I was lucky to grow up with a mother who put food in front of me three times a day, so I ate quite regularly as a child. The downside was that, when I became a teenager and began spending more time out of the house, I didn't yet have the ability to notice for myself when I needed to eat or take appropriate steps to acquire food before I collapsed.

And here we run into the real problem, which is that sometimes, when I haven't eaten recently enough, and especially in the morning before my first meal, I cannot function. I don't mean I am grumpy or groggy or poor at making decisions. I mean that, intellectually and emotionally, I revert to essentially the same level as a tired toddler. I can't make the simplest choices. I burst into tears at minor frustrations and then can't stop crying. I'm very nearly helpless, particularly if anyone asks me to do or think about anything that I can't do on autopilot.

My mother and I really discovered this shortcoming on my college tour trip. We had stayed overnight at a hostel, and in the morning we dressed and set out to find a place to eat breakfast. My mother asked me what I wanted. I wasn't sure. She questioned further, trying to get a better idea or a decision. I became mildly hysterical. I have a vague memory of standing on a sidewalk in tears, wailing "I don't know! I don't know!" over and over while my mother looked on in shock and confusion at her college-bound, nearly-adult daughter going entirely to pieces over the question "what do you want for breakfast?" I was completely out of control in what I now recognize as a meltdown.

Somehow, Mom got me calmed down and into a cafe, and I managed to order something. Within minutes of starting to eat, it felt like I returned to awareness after having been only dimly conscious of myself. I still felt shaky, but I was suddenly rational again, able to control my emotions, to think, to focus. The feeling of panic and overwhelm was gone.

"I think," I said, eventually, "it may be best if, in the future, you don't ask me any questions until I've had something to eat. You can choose for me next time, ok?"

"That sounds like a very good idea," said my mother, who was a bit emotionally exhausted herself by the ordeal.

It wasn't quite as easy as that. She's forgotten this rule sometimes, and I'm usually in no condition to remind her of it when that happens. Sometimes she doesn't know I haven't eaten recently until I melt down over something minor and she thinks to ask. Sometimes there are questions she needs an answer to before breakfast. Often, I'm fine up to a point-- I can answer certain questions better than others, or I wake up energized and am ok for a while before the need to eat sets in. Then it takes everyone, myself included, by total surprise when I suddenly break down.

I've become more adept at managing this over the years. I make breakfast plans the night before. I warn lovers and traveling companions about the hazards of questioning me before I've eaten or at least drunk something with calories in it. If we plan to dine out for breakfast (not a common occurrence), I eat a granola bar before leaving home.

Over the years, my primary tactic has become a lot simpler. Now there is always some kind of snack food on my bedside table. Usually, I admit, something with a fair bit of sugar in it-- a single-serve packet of cookies, for example, or a candy bar-- something I'm not likely to turn down even if I don't feel the least bit hungry. So I get some sugar into my bloodstream before I even get out of bed, and I find it helps me be more alert and functional in general (I've been tested for hypoglycemia, by the way, and I don't have it-- or any number of other metabolic abnormalities that have been suggested. Ultimately, though, in this case it hasn't been a diagnosis that made the difference, just finding a coping strategy). I'm sure plenty of people, including my mother, would disagree with me from a nutritional standpoint, but it works for me. And some days, it truly makes a world of difference.

Small things matter. Individualized coping strategies matter. Identifying needs and triggers can mean the difference between a horrible day for everyone and the complete opposite. It does no good to blame someone for going to pieces when they can't handle something, and it doesn't really matter why they can't handle it, either-- you just have to accept that they can't and work from there. Abilities can vary a lot with context. This story is the very simplified version-- lots of ups, downs, and variations actually occurred before this all ran smoothly. And my coping strategies still fail me at times, particularly if something interrupts my regular routine. But such failures happen less often now than they used to. Years of practice helped. Hang in there. Keep trying things until you find what works for you.



Sunday, August 10, 2014

The Unrecovered (response to the New York Times's "The Kids Who Beat Autism")

I have had a lot of reaction in the past couple of days to that Times Magazine article concerning “The Kids Who Beat Autism.”  Here’s about all I have left.

The parents, the teachers, the therapists and researchers without a clue who are celebrating “recovery” because in their heads they’re defining autism as a fixed set of permanent inabilities—

-Are not the people doing the work of passing, and are not going to be the ones to find out first-hand just how long it isn’t actually sustainable.

-Are not the people who get told we’re too articulate to be autistic but have to ration our hours of speech per day.

-Are not the developmentally disabled women who suffer a sexual abuse rate of over 90%, no thanks to the compliance training that teaches that allowing others to control our bodies is desirable behavior.

-Are not the kids pulling themselves through school without disability accommodations.

-Are not the kids getting their supports pulled out from under them when they lose a diagnosis.

-Are not the kids getting chided and belittled because their challenges and oddity are now seen as choices of defiance or misbehavior.

-Are not the people being lied to about who they are.

-Are not the people who are going to wake up one day 20 years from now with no idea who they are or how they got there.

-Are not the people who will spend a year and a half having a meltdown with no idea of what’s happening or why.

-Are not the kids being taught that accepting yourself as you really are and as you really work, would be the worst possible thing.

-Or that the “best outcome” possible for you is to spend the rest of your life pretending to be something you’re not.

-Are not the people who are going to have to re-learn where they belong in space and time and how to live there.

-They will not be the people giving these kids a community and a support system years from now.  They will not be the ones who know what to do when they start having breakdowns and burnouts.
They will not be the ones supporting their kids in learning self-acceptance when all their passing skills fail because they are actually incompatible with functioning in the long term.

We will.

They will not be the people there to pick up the pieces.

We will.

There is, indeed, hope for the kids featured in this article, for joy and authenticity.  This article could’ve come with a spoiler alert; we know the end of this story.  We know it many times over.

It’s just not that these kids live out their lives as non-autistic people.

(Crossposted from Chavisory's Notebook.)