A History of Autism and AAC
Currently the rates of autism diagnosis in the United States are 1 in 68 children. With rates this high, most people have a relative or know someone who is affected by it. In 1990 the rate of autism was 1 in 5000 and it was considered a rare disorder. Because of that there was minimal research into the causes of autism and little was known about how to effectively teach children with the disorder. One of the core deficits in autism is the ability to communicate. The difficulties can range from idiosyncratic or repetitive use of language to having no verbal language at all. The use of augmentative communication for individuals with autism continues to be an emerging field. As technology continues to develop; the possibilities for innovative forms of communication devices and methods also increase. Historically, many of the employed techniques came from other fields and were designed for people with various disabilities. It is important to understand this history to see how we arrived at where we are today.
The use of alternative methods of communication can be traced back to classical Rome and ancient Greece when Plato was writing about sign language used by deaf Athenians around 385 B.C. There are also manual languages documented for the deaf in European cultures between the sixteenth and eighteenth centuries. These manual languages were also used by Native Americans who had a system of gestures to interact with other tribes, which led to the creation of a complex method of communicating between speakers of multiple languages. These were the foundations of a field we know today as Augmentative and Alternative Communication (AAC).
There are many types of AAC including sign language, gestures, picture symbols and speech generating devices. These methods have proven to be useful for people with any type of disability that impairs communication such as cerebral palsy and autism and have also helped those with degenerative diseases such as ALS and Parkinson’s disease. Difficulty with communication impacts quality of life in many ways and creates barriers to the access of education and community services. An individual’s ability to express their needs, wants, thoughts and feelings is vital to being human and connecting with others. Many behavioral challenges result from the frustration of not being able to communicate and the utilization of AAC can minimize or even eliminate dysfunctional behavior in disabled individuals.
The use of AAC began in the 1920’s when professionals started using communication boards to treat individuals with severe disabilities. The first board that was generally available was the F. Hall Roe Communication Board. It was created for F. Hall Roe who had cerebral palsy, then replicated and printed with notches which allowed for the board to be printed and mounted on wheelchairs. Jumping to the earliest electronic communication devices; the Patient Operated Selector Mechanism (POSM), was a sip-and-puff typewriter controller created by Reg Maling in 1960. He was inspired to conceive the POSM when he realized that paralyzed people in a hospital he visited only had a bell to communicate with. Other notable devices were created around this time including the Patient Initiated Lightspot Operated Typewriter (PILOT), which was operated by pointing light beams at photoelectric cells. Keith Copeland documented many of these devices in his “Aids for the Severely Handicapped” book from 1974.
Autism came to the forefront in 1943 as a result of the work of Dr. Leo Kanner at John Hopkins Hospital. Dr. Kanner authored a paper titled “Autistic Disturbances of Affective Contact” where he described 11 socially isolated children who shared high intelligence, a strong preference for being alone and an “obsessive insistence on the preservation of sameness”. Kanner was also responsible for decades of misconception about autism as he believed it was a form of “childhood schizophrenia” and theorized that autism was a result of emotionally distant mothering. In a 1960 interview he described parents of autistic children as “just happening to defrost enough to produce a child” but it was Bruno Bettleheim who gave the term “refrigerator mothers” its widespread popularity.
It is important to note that Kanner’s point of view on autism was not the only one that existed at the time. An Austrian pediatrician named Hans Asperger was also conducting a lot of research on the topic. He published the first definition of what we know today as Asperger’s Syndrome in 1944. Asperger identified a pattern in four boys that included “a lack of empathy, little ability to form friendships, one-sided conversation, intense absorption in a special interest and clumsy movements”. It is apparent from his writings that Asperger had more of a positive view on the condition. He noted their ability to speak about their favorite subjects in great detail and predicted that they would go on to use their special talents as adults. It is likely that Asperger was working with higher functioning autistics on the spectrum.
Therapists began applying the principles of behavioral psychology in the 1960’s to help individuals with autism and related disabilities communicate. The foundation of this work was using positive reinforcement by rewarding a desired behavior so that it would likely be repeated. This was the beginning of what we know today as Applied Behavior Analysis (ABA) therapy. Much of this was done through the use of communication boards, similar to the one used by F. Hall Roe in the 1920’s, which predated its time. These boards were never really designed specifically to treat autism, but were adapted by the community.
A speech language pathologist from the University of Iowa State Hospital-School named Beverly Vicker, documented her efforts to create communication boards for people with varied disabilities in her book “Nonoral communication system project 1964–1973”. The communication boards themselves were quite varied: while some had pictures, letters, words or symbols, others were a combination. Some communication boards were very simplified with just a few words or icons, while others were documented as having up to 800 words. There was a wide range of ways people interacted with these boards including fingers, pointers, head sticks and other devices.
A major advance in the field came in 1971 when Shirley McNaughton of the Ontario Crippled Children’s Centre started working with Blissymbolics. The symbol system was originally created by Charles K Bliss for the purpose of international communication. Shirley led an interdisciplinary team to apply the system to the communication of children with physical disabilities. The symbols were used to communicate general concepts and were combined together to form words. The system was flexible and allowed for individuals who were more advanced to communicate faster.
In the 1980’s, autism was classified as a developmental disorder in the third edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-III), a manual published by the American Psychiatric Association. This was a major breakthrough, as autism was now officially and medically differentiated from schizophrenia. The rates of diagnosis at this time were about 2–5 per 10,000 people. In 1987, O. Ivar Lovaas, a psychologist from the University of California published a scholarly article titled “Behavioral Treatment and Normal Educational and Intellectual Functioning in Young Autistic Children”. In his article, Dr. Lovaas described that after intensive training, some autistic people had been able to catch up to their peers and function in conventional classrooms.
Public awareness of autism rapidly grew in the 1990’s and over seven major research centers were founded. The rates of diagnosis also increased to approximately 5 in 10,000 people. As the need for services became more apparent many new government programs were created. There was still a big misconception about the factors that caused autism and many mothers were being falsely blamed for causing autism in their child. It was also a very difficult time for parents as they had to advocate to get the proper programs for their children in school systems. ABA therapy and communication devices were not widely accepted or used in schools at the time; some schools even prohibited them completely.
Research advanced dramatically in the early 2000’s when the Children’s Health Act was signed into law. The act provided funding for a long-term autism research study and also established a research coordinating committee. In 2005, Bob and Suzanne Wright, grandparents of an autistic child, founded Autism Speaks. The organization was launched with the help of Bernie Marcus, a family friend who donated $25 million dollars to get it running. Autism Speaks has become “the world’s leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.”
Today, society’s attitude toward autism seems to be shifting away from autism awareness, to autism acceptance. The rates of diagnosis keep increasing, as just a few years ago it was 1 in 86 children, compared to the previously mentioned rate at 1 in 68 today; 25 percent of whom are completely nonverbal. Through AAC combined with individualized therapy, many individuals with severe autism now have a much higher chance of learning some form of communication. The work of Dr. Lovaas is still widely practiced through intensive ABA therapy, sometimes consisting of 40 hours a week for up to 5 years. This has led to many communication breakthroughs for individuals who were completely nonverbal and are now fully communicative. Just as the research and therapy becomes more sophisticated, so will the devices that are used to enable communication.
Most of the current devices, applications and other “solutions” seem to be created with a goal of helping the autistic person learn to use language the way we do. In 2007, a severely autistic, nonverbal woman named Amanda Baggs published a video on YouTube describing the experience of living as a person with autism. In the video she types: “We are even viewed as non-communicative if we don’t speak the standard language, but other people are not considered non-communicative if they are so oblivious to our own languages as to believe they don’t exist.” This implies that the needs and wishes of autistic people are being left out of the design process and it is my belief that the next phase will consist of people on the autism spectrum designing solutions for other autistics.
References posted here: http://bit.ly/20u7lJQ
