Autism, a disorder that in the past 20 years has seen its rates of diagnosis increase twentyfold, seems to afflict white children more frequently than minority kids. No one knows exactly why. It may be because white families tend to have greater financial resources and more information available to them than minority families. As a result, parents of white kids with autism are more likely to press their cause or even sue school districts so as to get behavioral aides for their children.
Julie Otto Miller, a computer consultant from a middle-class, white family in the Los Angeles area, is not contemplating suing a school district, nor does she think at this point that her daughter Rosie, a gifted six-year old who has been diagnosed with Asperger's Syndrome, needs a behavioral aide to take her from class to class at her school.
Julie just wants Rosie to learn more about social cues, skills she hopes Rosie can pick up from talk therapy and play therapy.
On a recent weekday at the Pasadena office of Rosie's grandfather, a financial consultant, Rosie was her kinetic, cheerful self.
Wearing a pony tail for her blond hair, a pink tutu and a black shirt that read Love in four different colors, Rosie made swooping moves like a ballerina; chirped with a lilt in her voice, extending the word, Yes, into Yeeeesss, for instance; and enjoyed opening and closing the office door in a variation of Knock, Knock.
I told her that she is a natural-born actress, but her mother, Julie, noting that Rosie does not do too well in groups, said that if Rosie is destined for Broadway it may be as a performer in one-woman shows.
Rosie, who loves school and, like some kids with Asperger's, functions at a very high level cognitively, has had trouble getting along with girls her age. She seems to do better with boys who apparently do not mind so much that she does not always adhere to the rules when they play games.
When I asked her if she likes boys, she blurted out, "Of course!" That is her favorite expression, which she uttered numerous times throughout our meeting, while grasping four or five pencils in her hand. At one point, she smacked a few of them on the table, and then drew a stick figure of herself with a yellow highlighter.
Rosie has many things going for her. She is extremely bright, with a fine memory for show tunes from the musical, Wicked, and has verbal skills superior to those of most children in the spectrum of autism disorders. She also has a dedicated advocate in her mother. (Full disclosure: Julie has helped me and my wife with our computers.)
Yet the state of California is facing a severe budget deficit and as a result has had to cut funding for education and the state's Department of Developmental Services.
In the future, it may be even more difficult for children with Asperger's to receive help from the government given that the American Psychiatric Association, which publishes the Diagnostic and Statistical Manual of Mental Disorders, has proposed eliminating Asperger's as a diagnosis and subsuming it under the rubric of autism spectrum disorder.
Should the APA implement this proposed change in DSM-V, scheduled to be published in 2013, some parents fear that Asperger's will be ghettoized as a diagnosis and that the health-care system will be less likely to cover children and adults who have the syndrome.
On top of these problems, there are some aggressive parents who game the system to get help for their children, who may not even have Asperger's. Rosie, by contrast, comes by her diagnosis honestly, through genetics. Her maternal uncle has Asperger's.
While there is no proven scientific method for curing autism, Alan Zarembo, in his series on autism in the L.A. Times last December, reported that some children with Asperger's have shown dramatic improvement from various therapies, including Applied Behavior Analysis, an approach pioneered by the late Ivar Lovaas of UCLA.
Rosie just started meeting with a therapist, and at this point in time Julie does not think that Rosie needs an aide taking her from class to class. That may change, however, when Rosie gets to first grade, which she enters in the fall.
Julie, who has a Masters in Educational Technology from University of San Francisco, is concerned that Rosie may get negative feedback from her classmates in the next few years. She has considered putting Rosie on meds primarily because she thinks that Rosie can be disruptive in social settings.
Julie and Rosie use a 1 to 5 code to indicate the level of intensity or relaxation that she should display. At our meeting, Julie told Rosie, who took off her shoes and socks and did cartwheels in the room, that she should adhere to a 2 or a 3 on the scale, which meant being more low-key than she was at the moment.
Rosie has benefited enormously from therapeutic swimming that is done in warmer water (Julie says that studies show that kids adapt better to warmer water), with fewer kids and almost no splashing. Rosie gets one-on-one time with her instructor, which she did not get before. As a result, she is now a fine swimmer, who loves the backstroke. She also loves horseback riding.
Julie pointed out that neither swimming nor horseback riding is a team sport, which may be one of the reasons why Rosie enjoys them so much.
As Rosie started slapping my hand with high and low fives, she said, "down low." When I put my hand down too late for her taste, she removed her hand quickly and with the whimsy of Puck, she giggled, "too slow."
Maybe, Rosie can be a bit disruptive in a classroom or a supermarket, as her mother pointed out, but I see in her a unique pixie. And I am reminded of Bob Dylan's line in "Maggie's Farm," "I try my best to be just like I am, but everybody wants you to be just like them."
With enriching talk and play therapy, Rosie, who swooped and chirped again as we left the office, has the promise to be a troubadour herself.