Sunday, June 27, 2010

Guest Post: Ambiguous Neurodiversity

Please welcome my college friend, Dave, who has written this guest post.  Dave is an accomplished musician and tech-savvy guy (and hey all you Boston-area ladies: he’s single!) who is struggling with his self-identity as he ponders an adult diagnosis of Asperger’s Syndrome.


This post grew out of a conversation about “ambiguous neurodiversity,” the state where one’s place between The Spectrum and Neurotypical is unclear. It’s the dilemma of being in a position where society’s general insensitivity towards issues of neurodiversity marginalize you, but not in a clearly identifiable position to benefit from the support networks and legal protections available to “truly” neuro-atypical individuals.

Anyway, the short version of my story is that I am an Aspie. Or I might not be.

The long story is quite a bit more complicated.

In undergrad, I went through teacher prep, and I worked three hours a week for a semester with kids aged 3-6 with PDD, autism, and other cognitive and behavioral challenges. I also had a close friend in town with a very low functioning autistic brother in his late teens. I knew the difference between Rainman and real-life autism. But that was 1995; almost nobody was talking about AS at the time.

Since my early experience and exposure to spectrum disorders, I have on occasion described some of my own behaviors and personality traits as ‘autistic,’ and once in a while I’d even ponder the possibility that it was more than an adjective. But that sort of ideation was always the fantasy of a self-diagnoser, or so I felt. The possibility that I could live with a spectrum disorder for 35 years without knowing it left me shocked, incredulous, angry at my parents for not recognizing the childhood patterns that precipitated my difficulties in adulthood, and… intrigued, curious, optimistic? A new door was in front of me, with new possibilities.

I brought the question of an AS diagnosis up with my therapist, and she quickly expressed her strong feeling that my primary diagnosis was depression. And thus began the wandering and wondering, unsure whether to trust a specialist with no more education than I have, but who has, presumably, helped clients with spectrum disorders in the past? Or my M.D., whose only experience with spectrum disorders is as the mother of an Aspie (who she says I remind her of)?

During this time, I came to realize an AS diagnosis would mean a lot to me. It would mean trying different avenues of therapy. It would mean access to a community that would understand the cognitive differences that my friends, family, coworkers, even my therapist, seemed unable to “get.” And it would explain a lot of things about my past and present experience, things for which I was, and am, desperate for an explanation.

It’s important to emphasize the sense I had during this period of not knowing who I was, what kind of brain I had, even whether the problems I perceived were real or imagined. This sort of ambiguity has a tremendous impact on me. If I am not sure what’s going on or am entering an unknown or unfamiliar situation, in any context (macro- or micro-cosmic, internal or external,) I become extremely uncomfortable and experience a high degree of stress. I think everyone experiences this; I don’t think everyone is paralyzed or overwhelmed by it, however.

But as I drifted through doubt and ambiguity, certain things started to click. The resonances began to overcome the dissonances. I found a quiz with more detailed questions, and a much more detailed analysis of the results, than previous tests I’d taken. On other tests I answered “no” to Clumsy, but on this test I answered yes to “do you have difficulty catching or hitting a baseball.” On other tests I answered “no” to lacking empathy, but on this test I answered “yes” to “do people get angry with you and you don’t understand why?” And so forth. And so two weeks ago I brought the results to my PCP for her to review.

I spoke to my therapist again on Thursday, June 17th. She reiterated her doubts but expressed openness to discussing it. The sticking point for both of us was the empathy issue. I strike her, and myself, as a highly empathetic person, and that is a pretty big contra-indicator for an AS diagnosis, or so I understand. But on Friday, I reviewed the results with my doctor, and she said what was already in the back of my mind about the empathy issue – that I’m an intelligent individual and I’ve adapted; I’m perceptive, and nurturing, and kind, and have learned to intellectualize an empathetic response where real empathy fails me.

In any event, perhaps ironically, perhaps auspiciously, on June 18th, 2010 (Aspies for Freedom’s Autistic Pride Day,) my doctor gave me a “working” diagnosis of Asperger’s Syndrome. I’m still not 100% convinced without a second opinion, but I am excited to be this much closer to having a slightly more certain and totally different perspective on the difficulties I’ve faced throughout my life.

The Autism Spectrum is just that – a spectrum. You’ve got individuals who are unable to take care of their most basic needs, like my friend’s brother; you’ve got individuals who are very high functioning but clearly display visible symptoms, and then you’ve got the infrared and ultraviolet bands of the spectrum – the invisible, ambiguous borderline cases, like mine. What it comes down to, for me, is that whether my brain proves to be a bona fide hair-dryer, or actually turns out to be a curling iron, or a waffle-maker, one thing is clear: my toast = epic fail. And not knowing why makes it all the more frustrating.

Everybody experiences challenges in life which only they can know, and I'm reluctant to compare mine to anybody else's. But I hope that sharing my experience has shed some light on what it’s like in the margins of the spectrum.

Thursday, June 24, 2010

Fresh Meat

I have survived, and LOVED, my first two roller derby practices. I'm not officially on a team: a dozen girls and I are in a category called Fresh Meat. During this probationary period we have to do several months of basic skating drills, pack training, and scrimmage hours before the league determines if we are qualified to join. Only at that point would I get to pick out one of the awesome names you all have been suggesting for me.

In most aspects of my life, historically, I have been lazy. I've relied on talent, instead of putting in the effort to develop a skill - especially if any sort of physical discomfort were involved. If I wasn't instantly good at something, I'd either give up or be content with my level of competence.

With derby, I find I'm actually putting in effort to master specific skills.  I'm throwing myself on a polished concrete floor - repeatedly - to improve my one-knee drops.  My crossovers are getting more fluid.  My baseball slides still suck, but I'm trying.

And I'm truly enjoying it.  I like my fellow Meaties and the girls in the league.  I like feeling like I'm becoming part of a group - that I belong.  I like how strong I feel when I leave practice, knowing I was able to push myself for two hours in a sweltering hot rink.  I dig the sexy image and the grrl-power vibe.

All this is making me start to feel more confident in my daily life.  I walk taller.  I'm less intimidated by strangers.  I have a bit more stamina for Ryan's antics.  When someone annoys me, I want to say, "Shut up, Bitch, I can handle you: I'm a derby girl."

My cousin suggested that I should write about my roller derby adventures in an entirely new blog, but I'm going to keep these stories here, because as much as I tell people The Ryan Files is about Ryan, or PDD, or parenting, it's really about me.  It's about my perceptions of Ryan, my complex feelings about PDD, my experiences in parenting.  I tried out for the league as a means of escaping all things autism-related, but the lessons of raising Ryan follow me into the rink, and the lessons of derby follow me home.

On a final note: if any of you works with a company that would like to sponsor Suburbia Roller Derby, please check out the league's website and learn all about the awesome benefits of supporting a fun, hard-working group of ladies!

Monday, June 21, 2010

The Good, The Bad, and The Hopeful

I had this ridiculously positive post planned.

After a rough couple of weeks, I was excited to be able to tell you that Ryan had had a fantastic language and behavior day, really communicating with us. We spent Saturday at Playland, first on the beach, then in the amusement park. He used words to tell us when he was ready to leave the beach and go on the rides. When I asked which ride he wanted to go on first, he thought a moment and then used words to tell me he wanted to start with the roller coaster. When offered a choice of chocolate or vanilla ice cream, he requested chocolate (instead of freaking out over the either/or question or insisting he wanted both chocolate FOLLOWED BY vanilla). He requested the "polar bear" ride by name, and later told us (unprompted) when he was ready to leave.

Stu and I were, naturally, thrilled by all this, and I reflected on the old adage that kids often take a step back before taking a big leap forward.

But then Sunday, we were back to tantrums and screaming and the complete inability to self-regulate. Sure, we had the occasional bright moment - like Ryan asking me, "Mommy, what are you looking at up in the sky?" - but highlights like this were overshadowed by obnoxious moments like the 20-minute fit at the park, which involved Ryan throwing himself at the ground repeatedly, then sitting on a path and screaming while his grandparents and I pretended to ignore him.

I really want to stay positive and focus on how far Ryan's communication skills have come, especially over the last month or two, but sometimes living with this kid and his challenges just sucks. This is why in our house, we celebrate Mother's Day and Father's Day by giving the honored parent the day off, child free (and man, did Stu luck out that he didn't have to spend Sunday with The Boy). I know that things are trending better, and we're having more and more good days, but the crappy times are still crappy.

A good day shows me a glimmer of our beautiful future, of possibility, which makes a bad day all the more painful. Knowing that Ryan is capable of telling us what he wants and staying focused and maintaining self-control makes it infinitely more infuriating when he can't hold things together.

Monday, June 14, 2010

Sunday evening, around 6pm

It's been raining all afternoon.

Me: Ryan, wanna go down to the basement and play in the hall*?

Ryan: Yes, I want to play in the hall.

Me:  Want to ride your bike?

Ryan: Yes, I want to ride my bike.

We put on shoes, he rolls his bike into the dining room, I put on his helmet.  Ryan then opens the coat closet and starts poking around on the floor.

Me:  OK, let's go downstairs.

Ryan straddles his bike, starts to pedal toward the door, cries, pedals, cries some more.

Me:  What's wrong?  What do you need?

Ryan: (incomprehensible word sounds/screeching/crying) skates (sobbing/screaming)

Me: Oh, do you want to go skating?

Ryan, tearfully: Yes.

Me: OK.

I take off his shoes, put on his skates and kneepads.  He skates through the door, starts to cry, throws himself on the floor.

Stu/Me: What? What do you want? (etc.)

Ryan: (crying/screeching/mucous) off the skates (crying/screaming).

Stu and I remove Ryan's skates and pads, offer him shoes.  Ryan dissolves in tears and snot.

Ryan: Wah aaah aaah mommy wah aaah on da skates aaah play in da hall.

Stu and I confer and agree that Ryan must want me to skate while he rides his bike in the hallway.  I put on my skates and kneepads.

Me: I'm ready, get your bike.

Ryan runs screaming down the hall, falls to the floor in front of the elevator.

Ryan, tearfully: Can... I.... have... play in the hall please?

For the love of God, yes, that's what we've been trying to do here.

I hold Ryan in the elevator while he sobs.  I use the bottom of his shirt to wipe his nose.  We get to the basement.  I ask if he wants to race.  I chase him once down the hall.  He throws himself on the floor crying.  I tell him to follow me home.

Ryan opens our door, puts his shoes on the shoe shelf, grabs a magic marker, and starts drawing at his easel perfectly calmly and contentedly.

Me: You're going to be the death of me, Kid.

I take off my skates and fantasize about margaritas.  Scene.



* There is a long tunnel between the buildings in my complex.

Friday, June 11, 2010

Kickin it Old Skool

When we went away last weekend, I anticipated the change in routine would throw Ryan off a bit for a couple of days.  I predicted the usual forms of regression - loss of useful language, potty accidents, the occasional tantrum.

I did not expect the return of behaviors we haven't seen in months.

Don't get me wrong - there have also been plenty of the expected regressions.  I'm talking about additional stuff, above and beyond the call of duty.  Ryan's putting in some overtime.

Like, when hanging up the hand towel in the bathroom, Ryan has reverted to only allowing one inch of towel to remain visible.  Alternately, he will hang the towel so all but one inch sticks out.  He had stopped doing both of these things months ago.

We also had a solid month or so without Ryan's insisting on stimming on his fork during meals.  Now, the fork is once again waving in front of - and way too close to - his eyes (and mine).

He has started asking to watch tv shows he hasn't watched since winter.

And after we turned off the light at bedtime tonight, Ryan lay in bed laughing maniacally to himself.  He used to do that a lot, but he hadn't done it in maybe a year.

I wish I could walk around inside his head and see how revisiting these behaviors is helping him re-acclimate to being home.

Monday, June 7, 2010

A Very Peculiar Field Trip

Today Ryan's class went on a field trip to Playland.

That sounded so normal.  Let's try that again.

Today Ryan's class went on a field trip to Playland's free day exclusively for individuals with disabilities.

The event was just as crowded as any other day at Playland (I heard an estimate of 10,000), but half the people were in wheelchairs, or in helmets, or were blind, or had almond-shaped eyes, or were behaving peculiarly.

Ryan and most of his classmates had a terrific time.  One poor kid was completely overwhelmed by the crowds and the noise, and when the teachers brought him on a ride, he went over the edge and fell into full-blown meltdown mode for the rest of the morning.  But otherwise, the kids liked the rides and handled themselves quite well.

One advantage of Individuals with Disabilities Day is that the boy could have his meltdown without drawing much attention to himself.  For perhaps the first time, he blended right in with all the other kids.

While I appreciate the existence of Individuals with Disabilities Day for just that reason, I still feel a little awkward that my child qualifies to attend.  I know he's in special ed, but I don't generally think of him as "disabled."  I could drift into PC and say that he's "challenged" or "special" or some other euphemism, but I know that by most definitions, my son has a developmental disability, and therefore he is disabled.

But knowing it and saying it are very different experiences.  Even if saying it gets you free tickets to Playland.

Sunday, June 6, 2010

Away

There is no such thing as Vacation with a small child.

There is Travel.  There is Visiting.  There is Spending-the-Weekend.

Not Vacation.


On Vacation, I relax.  I sleep late, eat at leisure, enjoy wherever it is I have traveled.  Traveling with a small child, I try to keep the kid as close to his usual routine as possible despite our being in a completely novel environment doing totally non-routine things.  I tend to his meltdowns when he gets flustered by the necessary changes in routine.  I walk the line between trying to interest him in doing something new and respecting his comfort zone.  And I get frustrated because I'd rather be relaxing. 


We rented a house in the Catskills for a long weekend to celebrate my mother-in-law's birthday.  Ryan had a mostly glorious time.  He played with hairy caterpillars - picking them up like dolls, stacking them into unwilling piles, introducing them to each other.  We swam in a lake, and paddled a row boat to a small uninhabited island.  He spent time with his grandparents and aunt and uncle and their beagle.  We caught tiny frogs and even tinier tadpoles (I even had a tadpole swimming about in my sandal!).  He painted my legs with his muddy toes.

We stuck to his usual meal and sleep schedules and other routines, and the entire first day he seemed thrilled with the adventure of staying in an unfamiliar place with new things to explore. 

The second day, he started to snap.  There were lots of meltdowns, involving crying and throwing his body into the floor, on purpose, hard.  My favorite meltdowns happened because he wanted to use the upstairs bathroom but preferred the downstairs toilet to the one in his bathroom of choice.  He did a lot of begging to "go home please."  After Ryan's bedtime, I drank more than enough wine and asked why nobody had opened a bottle for me earlier.

The final morning, he had had enough. His meltdown reflex was on a hair trigger.  Even after we got home, the wailing continued.  I sincerely hope a night of sleep in his own bed will reset all this.

Ah, vacation.  Someday...

Wednesday, June 2, 2010

In his element

My grandmother was the one who would bring me to The Beach when I was a kid.  Going to the beach with my grandmother meant leaving first thing in the morning, driving an hour to Jones Beach, dragging towels and a beach chair across burning sand, spending the whole day swimming and building sandcastles, and leaving around dinnertime, exhausted and sand-caked and sunburned.

My father would take me to a very different kind of beach during my childhood - a local stretch of swimming-prohibited shore where we would search for dead things and use medical waste as squirt guns.  I never even considered taking off my shoes or digging there.  And I never thought of it as going to the beach.

Ryan adores going to the beach.  For Ryan, going to the beach means spending a couple of hours on a swimming-friendly harbor beach about 20 minutes from home.  There is a sprinkler park and a playground and grassy areas where he can pick dandelions.  There's often a pair of swans aggressively protecting their babies at the north end of the beach, and a school of tiny translucent fish at the south end.  No matter how many people are on the beach, Ryan is utterly at peace, breaking up the dry top-layer of sand with his fingers, wading up to his waist.  He walks barefoot - a lifetime away from the shrieking sensory-defensive mess he used to become if sand touched his skin.  I point out interesting shells and rocks; he throws them into the water without looking at them.  Sometimes he sidles up to the sprinkler park, teetering on the edge of his comfort zone (you can tell which side of the comfort zone border he's on by whether he stands on his toes or on flat feet).

At the beach, Ryan doesn't even know I'm there.  He doesn't even need to recite Chicka Chicka Boom Boom.  He is in his element.  Peaceful.  Quiet.  Intense.  He works his way across the beach on his hands and knees, methodically crumbling the crust of the sand inch after inch.  He jumps over thin channels of water, and walks around other kids' castles without knocking them over.

He is happy.

And then he passes out in the car on the way home.

I am forever grateful to the occupational therapists who have helped Ryan overcome his sensory discomforts so he can enjoy the beach and tap into an elemental part of himself.