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.
I'd love to see something in the article to back up this assertion. "Aggressive parents" gaming the system? How exactly? Pretending their child has ASD? To what end? Schools do their own assessments of kids suspected of having special needs, they don't just take the word of "aggressive parents" about a child's disability. What parent loves to go around pretending his child has autism? Kids with ASD get few services in most school districts. It's a nightmare. I highly, highly doubt there are parents faking an ASD diagnosis for their child. It's a stigmatizing and isolating diagnosis. Children with ASD are often excluded from private schools, camps, sports, and who knows what else. Unless a parent is sick (i.e., Munchausen by proxy), he would not pretend his child had a developmental disability when he did not.
The only stigmatiazing and isolating thing is your insistence that your child has to conform to exactly ever little thing in the universe. I highly, highly doubt that anything you said was in good faith.
Second, I've seen gaming happen first hand. Here's what happens... a child has a developmental disability that qualifies him for X services. A diagnosis of ASD will result in the child qualifying for X,Y, and Z services. The parents want those services and push for an ASD diagnosis. The school district acquiesces to avoid a big lawsuit. System gained.
Third, I believe that districts should offer more services to kids with special needs. Not providing such services is a huge systemic failure at all levels of the education system. As such, some parents (almost always folks who have lots of resources) game the system.
Unfortunately, one day she lacked patience , and she punished him for not understanding an assignment. His punishment was that he was left alone in a darkened room for 40 minutes while his classmates went to lunch. Not a single person from the school or the district, the Jordan School District, ever apologized. After about ten days they circled the wagons and went with the story that my son was accidentally left in the darkened room.
Some school districts do a very poor job dealing with children with disabilities. Here in Utah, schools are under funded and monies are often mismanaged by administrators more concerned with power and rewarding cronies than they are educating children.
I removed him from school. I now home school him. Despite my having earned a masters in social work, I was not very informed about what Asperger's Syndrome is. But the more I learned about it, the more I became convinced that my son had it.
It is a great mistake to remove Asperger's Syndrome from the upcoming DSM-V. It is of the utmost importance to have this diagnosed in order to formulate informed plans to help the child.
If you feel your child has Asperger Syndrome, find a developmental pediatrician and make an appointment for an evaluation. It can take months to get such an appointment, so get on a waiting list if necessary. Many universities have autism assessment clinics and some of them take insurance or are grant-based and have a reasonable fee. Other private assessments can be very expensive, sometimes running into the thousands of dollars.
Possible reason:
Autism: The Eusocial Hominid Hypothesis
ASDs (autism spectrum disorders) are hypothesized as one of many adaptive human cognitive variations that have been maintained in modern populations via multiple genetic and epigenetic mechanisms. Introgression from "archaic" hominids (adapted for less demanding social environments) is conjectured as the source of initial intraspecific heterogeneity because strict inclusive fitness does not adequately model the evolution of distinct, copy-number sensitive phenotypes within a freely reproducing population.
Evidence is given of divergent encephalization and brain organization in the Neanderthal (including a ~1520 cc cranial capacity, larger than that of modern humans) to explain the origin of the autism subgroup characterized by abnormal brain growth.
Autism and immune dysfunction are frequently comorbid. This supports an admixture model in light of the recent discovery that MHC alleles (genes linked to immune function, mate selection, neuronal "pruning," etc.) found in most modern human populations come from "archaic" hominids.
Mitochondrial dysfunction, differential fetal androgen exposure, lung abnormalities, and hypomethylation/CNV due to hybridization are also presented as evidence.
https://docs.google.com/open?id=0B3dPqM3qgNSiY3p5TmFRMjhSekdyaV8wWUw0MTZiUQ
A short video introduction: http://www.youtube.com/watch?v=Jk_85vNaSMA
The full 2-hour video presentation: http://www.youtube.com/watch?v=r6-6Naz-C0M