“Lucky Charm”: For Autism Awareness Month

the 2 brats are up to mischief, as usual...
the 2 brats are up to mischief, as usual…

Though I wonder whether the plethora (excess?) of “awareness months” dilutes the meaning of such initiatives, I do try to take some time to reflect on whatever causes are associated with a given month.  This month’s “awareness” issues include autism, which is near and dear to my heart.  My wonderful brother Danny has autism, so I’ve been “aware” of autism in a very real way ever since he was diagnosed about 25 or so years ago.

I’m struggling to write this as articulately as I would like… but I’ll forge ahead.  Forgive the rambling.  I can’t do my thoughts justice now, but I’d rather write them out.

When I was in the Philippines during a research trip, I was talking with one of my local friends about Danny.  She told me, “Here, we call children like that ‘lucky charms’, because they bring the family closer together and teach you to care more about each other.”  That is exactly what Danny has done for our family.

If you’ve never met Danny, it’s hard to understand what his autism is like.  He’s not a savant, nor is he “severely” autistic.  I suppose he’s somewhere in the middle.  He doesn’t generally talk, except in some phrases that he’s learned to associate with basic meanings or routines, such as “I want to go to the bathroom”, “We are going to the movies!”, “Houdini [the dog] is sitting on me!!!” (he has never cared much for canine company, though we grew up surrounded by dogs).  He is very capable in many ways, but he has countless quirks about which he can be extremely particular.  He takes care of many chores in my parents’ house, because he loves routine, and will often get upset if anyone tries to “help” (e.g., “EXCUSE ME, TARA,” as he pushes me aside and grabs dirty dishes from me).  He watches the same movies over and over again, to the point where we’d take to hiding the more annoying  children’s movies and have redirected his interests to the various BBC nature documentaries.  He has no social awareness, speaking in a very loud voice (he appears to very much enjoy profanity, and will loudly repeat any impolite words you might utter!), practically running over people with his shopping cart as he rushes around finding groceries, gazing off into space.  When I take him out in my car, he insists on making his seat even with mine (which is why my friends often find my passenger seat to be pulled impractically far forward, as I have rather stubby legs).  His way of saying, “I miss so-and-so”, is to ask, repeatedly, “Where is so-and-so?”, even if he knows where they are.  His way of saying, “I want to go home”, is “Go home?”, repeated plaintively (and, sometimes, naggingly).  Though the tone of his speech is somewhat distorted, almost similar to how deaf people speak, he has surprisingly acute hearing, sometimes chiming in to conversations from rooms away.

dance party!

He absolutely loves oldies music, and often get lost in a trance when listening to it, his eyes lighting up as he gallops and and sways around the house with complete abandon, singing loudly (we Whitty kids have the best dance parties, see photo above).  He loves going out – to the beach (where he’ll dig in the wet sand looking for “sand crabs”), the zoo, the movies, the grocery store.  We can’t tell him too far in advance when we’re planning on taking him somewhere, because otherwise he’ll drive my parents crazy by repeating, in anticipation, “GOING TO THE ZOO WITH TARA!”, “GOING TO THE BEACH WITH EIRA!” (our younger sister), “GOING TO THE MOVIES WITH LIZ!” (Liz is his Best Buddy, and she is fantastic with him).  He knows his way around the kitchen, acting as my mom’s sous-chef, and is very strict about people snacking on ingredients while cooking.  He adores Eira, his long-time co-conspirator against me, the responsible, scolding older sister.  He relishes his time with us, coming to our rooms when we visit home to “hang out with Tara and Eira!”.  Thanks to Eira and her stubborn affection, he is a great hugger. This is in contrast to his younger days, when he hated physical contact and would squirm away in distaste if Eira or I accidentally fell asleep against him during long car trips.

this is how eira taught danny to appreciate hugs.
this is how eira taught danny to appreciate hugs.
in chef danny’s kitchen, nibbling on food before it’s ready to serve is unacceptable. a dog on the counter is disgraceful. he’s not pleased.

Where he is today, as a 27 year old, reflects years of slow progress.  Teaching him the difference between “yes” and “no” took months.  Teaching him how to properly use “you” and “me” was even more tricky, and even now he sometimes doesn’t get it right.  But, looking back, 20-some years of “slow progress” can make a big difference.

I believe that I remember when it started, when the change happened, during our early childhood in Japan.  I must have been around 3 to 4 years old, Danny around one to 2.  I have vague memories of him starting to verbalize, starting to talk…and then, it was like a switch turned off.

He did go to regular preschool; one of my most vivid memories from that time was when my parents were called in for a parent-teacher meeting about his strange behavior.  They picked me up from my kindergarten class, and we walked into Danny’s classroom together.  His teachers were standing to the side, watching him with sincerely baffled expressions, as he boisterously jumped from table top to table top while making burbling bird noises.  I also seem to remember when the doctors finally identified “autism” as the condition.  In the 1980s, autism was definitely not the household word it is today, and it was not an obvious condition to diagnose.

at a kindergarten assembly on music, i was astonished to see danny run up on stage and start running among the instruments.
at a kindergarten assembly on music, i was astonished to see danny run up on stage and start running among the instruments.

Since we moved to San Diego in 1989 (a hotspot for autism research and therapy), my parents have tried countless therapies for Danny.  It’s an exhausting, disheartening process: first, hearing about a new approach that worked miracles for some cases, and thinking, “That sounds amazing!  It sounds like that kid had similar symptoms, so maybe this will work!”; then, buying the needed supplies (generally, not cheap) and putting Danny through an often harrowing process that can result in radical changes in behavior (aggression, extreme lethargy, panicked OCD, persistent echolalia).  This is the worst part, I think, because you can see that the treatment is clearly doing something, but you don’t know if that something is just a difficult part on the road to true recovery, or if it’s just putting him through an ordeal that will never result in any progress (or, perhaps, be irreversible).  My mother has gone through countless iterations of this raised-to-dashed hopes cycle, and her tenacity is truly admirable.  I remember her seeing her cry, often, about Danny when we were much younger.  I see a similar look of sadness, almost despair, on her face when Danny’s going through a particularly rough time.  I can’t imagine how hard it is for her.

There is a lot of quackery, deliberate or accidental, that goes on in peddling these treatments.  There simply are not enough affordable, available doctors who are qualified to guide families through the process of choosing and trying treatments.  As a result, many parents turn to the internet, and rely on unsubstantiated, unscientific reviews of therapies – because there really are no other options.  I’ve advised my parents against some incredibly expensive, highly questionable treatments, and they’ve gone against that advice, but I suppose it’s not really my place to make those decisions.  They live with Danny and are his primary caretakers, and I understand that a parent’s passion for their child’s well-being can inflate hope until it eclipses skeptical reason.

For me, as a scientist (in a very different field), it’s frustrating to see this state of affairs and to feel totally unequipped to assess the information that’s out there.  For whatever reason, I have always been afraid to learn more about autism.  My mother passes along books and articles for me to read, and I just can’t bring myself to read them.  I can’t identify why.  It feels too close to home, perhaps.

There was a time when I felt an unspoken expectation that I would use my affinity for science to study autism, and it made me uneasy.   When I learned that I truly did not enjoy labwork, I was almost relieved that I had a justification for myself for why I wouldn’t pursue medical science.  My parents never expressed disappointment, and supported me as I plunged into what I discovered was my true passion: conservation science.  But, when I told a family friend, and prominent researcher of autism, that I was going to Thailand to study monkeys after college, he said: “Wouldn’t you rather be helping people with autism?”   I couldn’t reply; the sharp, sudden twinge of guilt and internal confusion incapacitated me.

I never really understood why I had such an aversion to studying autism.  Maybe it’s because every professional setback would feel like a deeply personal failure.  Maybe I’d grown hopeless that anything could work miracles for Danny.  I rationalized that I’d rather make Danny’s life better by being a caring sister, and that I’d rather help others with disabilities as a volunteer.  And that’s what I try to do, though I know I could be doing a better job.

Sometimes, when I do take the time to think deeply about all of this, I get profoundly sad.  Will I ever fully know the Danny who is trapped within?  Or, more horrifyingly: is there anyone in there?  What would he be like if he didn’t have autism?  What does he feel?  Does he feel trapped?  I regret everything that he probably won’t get to experience.  I worry about my ability to take care of him someday.  I worry about him being bullied, or the possibility of him being forcefully restrained by police during his more uncontrollable phases (horror stories of people with autism dying from such events do exist, and that’s why we finally got an ID bracelet made for Danny explaining that he has autism).

But I’ve learned that getting mired in those thoughts is unproductive.  As I’ve grown more mature, I realize that the Danny I know is the real Danny, as complete and wonderful a person as I could ever hope to have in my life: sweet, genuine, happy.  And, though it sounds strange, I can be grateful for what autism has brought to my family: compassion and incredibly strong bonds. The latter is all the more remarkable because, among my parents, sister, and me, we have quite the collection of colorful, difficult, volatile quirks that would probably not be conducive to close ties without our gentle Dannybear to bring us together (I love them all dearly, but we drive each other nuts).

With Danny, I’ve learned the importance of watching out for others.  I remember the deep-seated dismay and disappointment I felt when I saw other kids in my school making fun of the special education students, with whom I often played.  This gave rise to marginal misanthropy that lasted pretty much through high school, as I witnessed how meanly people could treat others.  I’d speak out for those being bullied, and reach out and befriend them.  My sister and I are both fiercely defensive whenever someone so much as gives Danny a funny look; as little girls, we’d unabashedly glare back at people who would give our family nasty looks when Danny was misbehaving in restaurants.  I have, on more than one occasion, gone somewhat overboard in restaurants, vocally defending Danny against people who’ve made nasty comments (very out of character for me).  Though I admit that overreacting to rude people in restaurants is not commendable, it’s in the same vein as the passion for helping people that drives my interest in conservation and volunteerism (and in just being a kind, accepting person).

With Danny, I’ve learned the importance of patience and of the smallest signs of progress.  I remember, in elementary school, the many hours spent teaching him how to pronounce basic sounds, carefully paying attention to his progress, often while we’d sit at the edge of the pool in the late afternoon light, our legs dangling in the water.  I think that’s where I developed my love for helping people  learn new things (which came in very handy while training field assistants!). When he came up to me, just a few years ago, and said “Hi Tara” without me having said anything first, I was stunned – he’d never initiated such a greeting with me before.  I almost started to cry from happiness.  Though it’s gradual, sometimes seemingly glacial, I understand the monumental importance behind each small sign of progress.

With Danny, I’ve learned to appreciate the simplest moments.  When I take him to the beach, or to the zoo, or just the store, we usually barely talk, but we interact just by being together.  I enjoy sharing time with him, even though most of that time is spent walking silently next to each other and occasionally exchanging high-fives (I don’t know how this became such an established routine).  When we go running together, I feel like we’re interacting, though generally he’ll gallavant along, usually singing some song passionately but unintelligibly.  When he’s happy and laughing, I feel a genuine, free joy that nothing else can match.

It’s been interesting to notice how public awareness of autism has changed over the years.  Almost no one I knew had heard of autism just 15 or so years ago; I had to explain, countless times, the basic conditions of autism.   And it’s been very heartening to have my faith in people vastly improved compared to my earlier schooldays.  I’ve felt trepidation at introducing friends to Danny, because I worry about how they’ll interact with him – I worry that I won’t be able to respect their reaction to and treatment of him.  In recent years, I’ve almost always been relieved to see how wonderfully my friends, and even just friendly acquaintances, get along with Danny.    My main complaint, really, is the widespread and casual use of the word “retarded” in conversation.

Well.  This is monstrously long, and incoherent, and took much longer to write than I’d expected.  It doesn’t do my feelings on the subject justice at all, but at least it somewhat conveys the myriad feelings, memories, and impressions that “Autism Awareness Month” elicits.  I hope that there will someday be more recognition of and support for the challenges faced by adults with disabilities; most of the funding for autism research focuses on children, but when those children become adults, the services available to assist them drop off.  In the meantime, I’ll do what I can to enrich Danny’s life, and I want to thank everyone (especially Liz!) who has done the same.  As a graduate student who has had to travel extensively, I have lapsed in my resolution to spend time with Danny, but I’m actively trying to make up for all of the months (cumulatively, years) that I’ve been away.  I’ve realized how lucky I am that I live only 30 minutes away from him, and as I approach my final year of graduate school and an uncertain future, it’s hitting me how much that proximity means to me…

I don’t think it’s any exaggeration to say that Danny has been, and continues to be, one of the most influential people in my life, second perhaps only to my mother.  He truly is our lucky charm.