Roll over Bettelheim (#131)

When people hear that "my son has autism," I'm sometimes asked, "so does he have any special skills, you know, like in Rain Man when the guy counts all the toothpicks?"

The notion that autistic persons have special "splinter skills"--being able to count huge quantities of things instantaneously, to recite seemingly endless lists of prime numbers--is a stereotype cemented in the general public view of autism thanks to films like Rain Man. When I am asked "does he have savant skills?", the unspoken thought is that Charlie's saying his name and nicely telling his grandparents that his birthday is "May fifteen" (thanks, Miss Cindy!) is not beautiful enough. As if, Charlie--cognitively disabled, neurologically different, minimally verbal and learning more every day--would only be remarkable if he could do something "special"; only if he displayed "splinter skills"--unique abilities (reading at some very early age, perfect pitch, a photographic memory) that would "make up" for his "impairments."

Fear terms distress me more than "idiot savant." The academic side of me knows that "idiot" comes from the classical Greek idiotes and refers to a "private citizen" (versus one's public persona) while "savant" is from French via Latin and refers to one who "knows," who is "wise" (as in homo sapiens). The parent in me takes huge offense at the implications of stupidity--okay, intellectual incapacity--in the word "idiot." I take great offense at the notion that Charlie and any person with autism is only "worthy" of notice for having "special skills." What's so great about Charlie--and Eileen's Andrew, and Sal's Baby Girl, and MOM-NOS's Bud, and Gretchen's Henry, and Kyra's Fluffy, and Christine's Oliver, and MommyGuilt's SmallBoy, and Debby's Michael, and Ginger's Chandler, and Brett's and Wade's and Tamar's and Astryngia's boys and Connor's thoughts--is the ins and outs of our daily lives that blogging makes possible to know about. What's "special" and, really (as Charlie might say) "super-dee-duper," is the simple triumph of the everyday each of our kids and our families lives through.

It has only been one day since Charlie began to strum and pick at the guitar and already it has joined the ranks of the favorite things he loads into the car before we drive an hour for his verbal behavior session. (The other items being the brown dog, the black dog which is actually a pillow for this, Daddy's blue blanket, green Bunny, and a box of plastic alphabet stencils that were discarded before the night was over, after Charlie's obsession with them became well, too, obsessive.) Charlie pulled the guitar onto his lap and "played" it, sometimes (Jim and I fancied) in time to the bright-toned rock from the CD player. He responded "yes, gih-tar" when I asked if he'd like to bring it in to show Miss Cindy and immediately started plucking the strings while lying on the big blue pillow.

Whether or not this is the humble beginning of Charlie's music career or another passing amusement, I can't say. Both the sound and the feel (the vibrations) of the guitar appeal to Charlie, and the shiney varnished wood--the long neck and curving sides--too. He has always "been into" and "liked" music; from the time Charlie was a baby, he perked up his eyes when Jim played his drum or I turned out lullabies on the piano. Jim has been singing "Let me tell you 'bout my best friend" and "We love you Cholly, oh yes we do" since before Charlie was born and I still tear up at the soft sounds of "Anu Latu," a worldbeat lullaby I used to dance to with an infant Charlie in my arms.

But the times Jim and I most often found ourselves saying "he's a musical kid" were some six and a half and seven years ago, in the murky time when Charlie had yet to talk, could barely walk, cried and screamed at the slightest change to a toy lined up on the floor. At the start of the winter of 1999 Charlie's autism diagnosis was some months away from being official but it was evident that "something was not right." When an evaluation team from the St. Paul Public Schools came to observe Charlie, I insisted on playing a Bach fugue; their report noted that he "seemed to respond when his mother played a piece on the piano." We enrolled Charlie in a weekly music therapy session in which a kindly therapist played the piano while singing "Hel-lo Char-lie how are you today, Hel-lo Char-lie listen to me say" (Jim still sings it and laughs at our desperateness then). Charlie spent most of the time banging on a radiator and running the length of the room and, after a few months, we dropped the session and focused solely on Charlie's ABA program. (I still remember my feeling bad because Charlie had fallen asleep on the car ride home and could not be woken up for his Wednesday session with Tara.)

We have been dragging around a piano--an old upright--through our sojourns in St. Louis, St. Paul, and New Jersey and I've tried several times to teach Charlie to imitate me playing simple tunes--"Twinkle, Twinkle," "Happy Birthday." His curiosity has been fleeting, with occasional fifteen-minute periods of possibly rhythmic pounding on the keys. Singing, CD's, toys that play songs have always been powerful motivators for Charlie, after his good-hearted therapists themselves. Long ago, Jim read--pausing between hope and sadness--that some autistic children can sing the lines of songs before they can speak in complete sentences. Jim had then glanced over at our little boy, babbling over some blocks on the floor.

"Maybe that'll be how he'll start talking."

I felt caught between hoping that would be the case, and wishing Charlie would just start talking in those full sentences tomorrow. (In those days--when Charlie was two, three, four--Jim used to relate dreams in which "Charlie was just talking"; "what did he say?" I would ask; "he was just talking, he could talk," Jim would respond and say no more.) And, Charlie can talk now (thanks, we always emphasize, to early intervention delivered in the form of his 40 hour/week therapy program and hours of speech therapy) though mostly in one and two word utterances, which do get the point across. "Brown eat! Fries. No." In the past year, he has indeed been singing longer and longer lines from songs, and not only from the children's repertoire ("Farmer in the Dell" and the like). A big favorite has been Chuck Berry; Jim started playing his Greatest Hits in preparation for his classes on 20th-century American culture and Charlie was soon singing the tune of "Too Much Monkey Business" and (Charlie's favorite) "Havana Moon."

I'm thrilled that Charlie has shown such interest in his little guitar. And I'm thrilled everyday to see his gorgeous smile that is the sunshine, and to hear his lithesome voice, and to chart how his shoulders have become more muscular, and to reflect on the "good looks" (as Jim put it) he kept giving his grandparents tonight, when we went to their house for dinner. And it is a lot of fun to turn on Chuck Berry and whirl around the room with Charlie to the tune of "Roll Over Beethoven" and "Maybelline" and to hear him pluckin "git-tarr" to the refrain of "Brown-Eyed Himself Man." Music does bring such chaos and creation into our house and our lives and I think the ancient Greeks were more than right to make it a fundamental part of a citizen's education, along with mathematics and rhetoric. Charlie can carry a tune and he can sing sentences that he struggles to speak and his face and eyes and whole being so brighten up to hear a few notes. When I turn off the CD player in the car these days, I hear an immediate "turn on" from Charlie in the backseat. "Mommy! Turn on. I want."

Perhaps the best way too put the everyday joy of our life with Charlie is, Roll over Bettelheim, and give Leo Kanner the news.

Autism Children Science Health Parenting