When Dr. Leo Kanner first wrote about autism in 1943, he changed the way many people understood intelligence. The first scientist to clearly define autism, Kanner was working with 11 children who appeared to be mentally retarded. Among his many conclusions was included his belief that despite their massive communication problems, some of his subjects were actually very intelligent – just not in the way that we expected them to be.
Unfortunately, through the intervening years, that view lost favour, and a majority of experts went back to believing that over 70% of autistic people were mentally retarded. Today, however, practitioners of Facilitated Communication (FC) are once more challenging our ideas of what it means to be really smart.
Sociologist and professor of special education Douglas Biklen brought FC to America when he created the Facilitated Communication Institute at Syracuse University where he is currently the Dean of Education. Last week, on a visit to Sri Lanka, he spoke to MediScene about the pros and cons of FC, and what it might mean at a time when more and more people are being diagnosed as autistic the world over.
He has a very simple motto: presume competence. “Too often, problems of expression are interpreted as problems of thinking,” says Prof. Biklen. He illustrates his point with an example from studies conducted by Leo Kanner himself. Kanner’s subjects would often take a long time to respond to questions, and when they eventually said something, their answers would appear to have little to do with the original question – but there was intelligence nonetheless. “He (Kanner) used the example of the subtraction problem. One of the questions on a test would be “What is ten minus two?” After some time had passed, the subject blurted out the word octagon,” explains Prof. Biklen.
Since Kanner’s time, clinical definitions of autism continue to evolve. It is currently considered a complex neurological developmental disorder, characterised by an ever expanding list of conditions that can include everything from difficult, repetitive behaviour like banging one’s head against a wall, to acute hypersensitivity to sound. It is most often diagnosed within the first four years of a child’s life. “It affects everything from social interaction to personal well being. They may want to step on the cracks or touch their nose to the poles, and it would appear to those around that they have a very narrow interest,” he says.
Much of the literature on autism not only claims that a vast majority of autistic people are mentally retarded, but that they are incapable of love. They are also believed to have no capacity for imaginative play, or interest in the world around them. But researchers were relying on standard IQ tests and facial expressions when they came to these conclusions. “These were judgements being made by non-disabled people using the standard of a non-disabled person,” says Prof. Biklen, adding that paradoxically, users of FC today “are establishing that they have strong emotions, that they have tremendously rich imaginative powers and that they would love to engage socially but don’t have the skills to do it; that they would love to be communicative but have not been taught a method of communication that could work for them.”
Challenges of Facilitated Communication:
That method turned out to be FC. However, “this is not an ideal method – If you had to dream up a way to help people communicate, this would not be it,” says Prof. Biklen bluntly. FC is a technique which allows non-verbal people to communicate by typing on a keyboard or alphabet board, or by pointing to a word (yes, no, thirsty, hungry are all examples.) Letter by letter, practitioners of FC can spell out entire sentences. Most often, a trained facilitator is required to support the hand or arm of the impaired individual. Though the physical aspect is negligible, the presence of the facilitator provides tremendous moral and emotional encouragement for the FC user.
The list of obstacles is daunting. First time FC users might have trouble isolating their index finger for typing. Hypersensitivity to sensory experience might mean they are unable to concentrate because of background sound. They may have sequencing problems, where getting words and letters into a legible order might be a gargantuan task. Others have eye-hand coordination problems. A problem dubbed ‘perseveration’ could mean that a user will just keep pointing at the same word. For some, just getting started might prove impossible.
On the other hand, when trainers like Prof. Biklen have begun working with new students, they have often been pleasantly surprised to discover that their pupils already knew something of the alphabet. The phenomenon is known as undisclosed literacy. “The notion is that if people grow up in a literature rich environment, most of them will inevitably develop some literacy skills.” By seeing subtitles on movies or advertising billboards on the street, a young autistic person might absorb some basic skills. “It’s thought that as much as 80% of the population will pick up some reading skills…but if the person does not have a way of communicating, they cannot tell you that they have literacy skills.”
The FC controversy
Independent typing, the phrase defined by supporters of FC as “typing without physical support,” (i.e, without being touched by another person,) is the ambition of most users. And it is also at the heart of the conflicting views on FC. Most users rely on their facilitators for support, but sceptics say that it is the facilitators who are actually doing all the “talking”. These accusations have taken their toll on FC’s reputation, but Prof. Biklen still sees the role of the facilitators as crucial and obvious – “I think we all have that, that if we feel we’re in a warm supportive environment we become more articulate, we’re able to take risks, and that’s a part of it.”
The difficulty that practitioners have managing on their own are all problems of performance, says Prof. Biklen, adding “it turns out we can’t associate problems of performance with problems of thinking.” He says, “that’s really the argument – FC is complex work…it takes a lot of practice, and over time the person can move towards greater and greater independence, but in many ways it’s the level of achievement of independence on the facilitator and the facilitator’s skills than the person with autism.”
Autism: on the rise worldwide?
“People talk a lot about autism being on the rise, but most serious scholars of autism would agree that 95% of the so-called increase is due to having a broader definition and to heightened awareness of what autism looks like and how it manifests itself,” says Prof. Biklen. “I’ve been in the field for 35 years, and 30 years ago, the people that we are now identifying as autistic were simply thought of as mentally retarded.”
It is difficult to exaggerate the importance of the correct diagnosis and treatment. It might be as basic as dealing with physical issues such as gastrointestinal problems (GI) which are sometimes associated with autism. But it is in education, however, where the biggest challenges seem to lie. “I think the challenge for Sri Lanka, and quite frankly for the rest of the U.S, is to provide quality education, to presume the person is competent, give them access to a literature- rich, pre-school programme, and then really integrate them into an academic curriculum.”
This kind of inclusion would mean that disabled children would be allowed to join their normal peers in regular activities and could transform the way our society deals with disability. Not only would disabled children be given the opportunity to learn essential social skills, but ordinary children would grow up with a better understanding of what it means to be disabled.
For those parents who are struggling to help their children find their feet, Prof. Biklen has this advice: Treat your child as intelligent, no matter what the behaviour – this goes a long way towards making the child feel appreciated. Provide a child with choices – yes and no are incredibly powerful words. Try to discover and nurture your child’s interests.
FC has allowed researchers some remarkable insights into the lives of autistic people. “I used to say talking to a person with autism was like playing twenty questions,” says Prof. Biklen, “you were struggling to find out what the person was experiencing and we just didn’t have a way to do it….but now we do.”
Published in The Sunday Times, Sri Lanka on October 19, 2008. Words by Smriti Daniel.