|
CNN Presents Flawed Look At Autism - A Review
May. 22, 2005 8:04
CNN presents flawed look at autism
© 1995-2003, The Jerusalem Post
By HANNAH BROWN
When she was 13, 26-year-old Californian Sue Rubin's IQ shot from 29 to 133 in months, thanks to facilitated communication - but is she typical of autistics?
The documentary Autism Is A World will air this week on CNN, but, unfortunately, it's a misleading look at the issue. This film, directed by Geraldine Wurzberg, focuses on one individual, 26-year-old Californian Sue Rubin. While Rubin is a fascinating person, the problem here is that the director presents her as a kind of oracle of autism - a role she seems to accept. Worse, there is no attempt to put her story in the larger context of the autistic spectrum. A viewer with no previous understanding of autism (a complex developmental condition which impairs the ability to communicate and interact socially) might come away with the impression that Rubin is a typical autistic person. While there is nothing wrong with a documentary that focuses on an anomalous case like hers, it's a damaging omission that the filmmaker does not make this point clearly. The director also leaves some of the most obvious and pressing questions about Rubin's case unanswered.
Rubin was diagnosed in early childhood as autistic and retarded. The great difference between her story and that of many other autistic children is that at the age of 13, she began to use facilitated communication and her IQ took an unheard-of jump from 29 to 133 in a matter of months.
Facilitated communication is a controversial and generally discredited method in which people who cannot speak type out their thoughts, usually with physical help from a teacher or parent. In case after case, it has proven to be a hoax; the caregivers were really doing the typing, rather than the disabled person.
Rubin's case seems to be an exceptional one, because she clearly types for herself, although she does need an assistant to hold the keyboard. A junior at Whittier College in California, she takes history courses and can type out answers to questions about complicated material. Yet she speaks only a little and with great difficulty, makes grotesque and disjointed movements, cannot go anywhere without carrying several spoons (which comfort her for reasons she can't explain), and seems most at peace watching water pour out of a faucet. She is also extremely small (perhaps she would technically be called a dwarf) and her limbs seem contorted. It would seem that she suffers from some kind of neurological condition other than (but perhaps related to) autism, but this is not a question that the director raises or explores.
In scene after scene, we see her typing complex sentences on her keyboard but failing to communicate on almost any other level. Her mother and various caregivers speak about her daily routine, but no one discusses what educational methods were used prior to and following her breakthrough with facilitated communication at age 13. Everyone around her, including the director, accepts at face value her statement: "As I began to type, my mind began to wake up."
While it's possible that that is the case, a little more information about her early life and other medical conditions would be welcome. Apparently she is among the 5% of autistic people who have savant abilities - that is, they have extremely well-developed abilities in certain areas, but are terribly impaired in others. The man portrayed by Dustin Hoffman in Rain Man was a savant, and while the general public thinks savants are typical, they are not. This is another point the director fails to make.
Rubin, who writes statements about her condition which are then read by caregivers at conferences, says that "My goal is to enlighten individuals about the power of their voices." This is certainly a noble goal, but it raises some questions. Although she is brilliant when typing, she cannot function in any normal social situation, and needs 24-hour-a-day assistance. Based on the film, it seems as if any attempt to help her overcome her verbal and social difficulties ended when she began typing. What ongoing therapeutic efforts are being made to help Rubin, and how does she respond to them? The film doesn't tell us.
Another question is, what bearing does her case have on other autistic people's lives? It is certainly the fantasy and fondest hope of most parents of autistic children that their child can understand everything, and will one day suddenly begin to communicate. However, literature on autism suggests that, other than in a few isolated cases, this does not happen. There have been reports of children recovering from autism, but these children did so after an arduous program of behavioral or cognitive therapy. They didn't simply sit up one day and start writing brilliantly.
One danger of the film is that it will give parents false hope and, worse, may make them complacent. Why bother to teach your child if one day he or she will magically start to connect to the world? Like another self-proclaimed representative of autistics, author Temple Grandin, Rubin attempts to speak for all autistic people, and the director does not question this. But Rubin's unique case simply illustrates the complexity of autistic disorders.
It is a triumph that Rubin can speak for herself, but the director should have made it clear that she speaks for no one else.
Autism Is A World will air on CNN
|
|
