By Jennifer Ganz, PhD, BCBA-D
Humans engage in communication practically from birth. Beginning in the first few months, infants use eye gaze and begin taking turns making vocalizations, or sounds, with others in their environment. Babies use crying and fussy noises to get their parents to change their diapers and feed them. Toddlers use single words to entice their siblings to look at the toys they are playing with and point their fingers to show their dads the cereal they want on the shelf in the grocery aisle. Eventually, we learn to communicate complex ideas verbally and in writing, such as via Hawks Hopes. I would argue that communication, which is a basic human activity, should be considered a human right. Consider the percentage of the day you spend communicating with others. If you include speaking, writing (emails, Twitter posts, and whatever social media the younger generations are using these days), listening (podcasts, the news, National Public Radio), reading (how many hours do you spend reading blog posts or Facebook?), and nonverbal communication (giving that warning look to your significant other when he’s about to spill the beans to your relatives), you will notice that you spend more time engaging in communication than in most other activities.
Unfortunately, due to disability or illness, many people are not able to communicate, particularly via speech, effectively. In my early 20s, I began working with Boyd, a four-year-old boy with autism, in his home, helping teach him a number of things that he was not learning incidentally like his peers were. It quickly became clear that one of the main reasons he did not learn as easily as his friends was because he had difficulty understanding what others were communicating to him and communicating what he wanted himself. This made it difficult for his parents to participate in everyday activities that one would expect to be able to do with a preschooler. For example, Boyd was not able to participate in regular swim lessons with other four-year-olds because he did not understand when the instructor was telling him to imitate blowing bubbles and stay with the group and he could not communicate his fear to her and threw a tantrum instead. Going shopping at the mall often devolved into tantrums as well because he did not understand when his mother told him that they could buy a pretzel after they got him new shoes and he could not communicate that he was overwhelmed by the crowd.
When I was at KU, I volunteered for an organization that provided free respite care for adolescents and adults with disabilities. I remember adult brothers who had a muscle disease that resulted in the need for use of wheelchairs and that made their speech very difficult to understand. Both of the young men held jobs and appeared to be bright and interested in interacting with others. I noticed that others appeared to underestimate them and spoke to them as if they were much younger children. People became frustrated by the fact that neither had an effective means of communicating and were only able to speak with the one or two volunteers who were very familiar with them because no one else could understand them, making conversation impossible.
Much of my work has been with children and adults with autism spectrum disorder and developmental disabilities who also have “complex communication needs” (CCN). This means that they are not able to use conventional speech at a level that would be expected of their same-age peers. As described above, difficulty communicating impacts individuals with CCN and their loved ones in almost every daily activity, from choosing a recreational activity, to going out to eat, to working in a job of his or her choice. Unfortunately, an inability to communicate through speech frequently leads to challenging behaviors, such as tantrums, physical aggression, wandering off, or stealing. These behaviors serve as alternative means of communicating, but also serve to ostracize the individual and reduce access to opportunities, such as employment, recreation, housing, and other arenas necessary for eventual independent living. Further, these behaviors lead to increased stress for caregivers. Because the negative impacts of an inability to communicate can be so severe and pervasive, I would argue that providing such people with intensive interventions and tools to assist them in communicating across all settings should be considered a human right.
The population with whom I work includes people with autism and similar characteristics. Those for whom I am advocating require alternative means of communicating because they have CCN. That is, these individuals may be able to speak, but they typically use speech is a limited manner. For example, Amara, a young woman with autism, was able to verbally ask for crackers and yogurt, say no to indicate she did not want to do a particular task or eat applesauce, say hi when entering her classroom and when her father arrived to pick her up at the end of the school day, and she frequently repeated lines from her favorite Disney fairy movie. However, she could not engage in conversation and typically did not understand when asked a question or when someone made a statement outside of her routines. Although Amara could speak, she frequently became frustrated due to a lack of understanding what adults were saying or failure to get her point across. She was a good candidate for the use of interventions that would improve her ability to understand and communicate and tools to help her do so.
I implore those of you who work with, love, and care about individuals like those I have described above to advocate for the use of evidence-based, research-supported practices. These include the use of augmentative and alternative communication, functional communication training, visual schedules and other visual supports. In the section below, I have provided some research articles in support of these, as well as resources for researching evidence-based practices for people with autism. Finally, I would warn against implementation of debunked and dangerous communication “strategies,” such as facilitated communication, supported typing, and rapid prompting, which have been erroneously referred to as augmentative and alternative communication, but which have been responsible for false abuse accusations and have been strongly recommended against by numerous professional organizations. In particular, if you are a parent or family member of a person with autism and other significant disabilities, you know him/her best and are his/her best advocate and you and your loved one are entitled to support and the tools you need to improve your and their quality of life.
Resources and Research
American Psychological Association Position Statement on Facilitated Communication: http://www.apa.org/research/action/facilitated.aspx
American Speech-Language-Hearing Association Position Statement on Facilitated Communication: http://www.asha.org/policy/PS1995-00089/
Autism Internet Modules: http://www.autisminternetmodules.org/
Ganz, J. B. (2014). Aided augmentative and alternative communication for people with ASD. In J. Matson (series ed.), Autism and Child Psychopathology Series. New York, NY: Springer. doi: 10.1007/978-1-4939-0814-1
Ganz, J. B., Earles-Vollrath, T. L., Heath, A. K., Parker, R., Rispoli, M. J., & Duran, J. (2012). A meta-analysis of single case research studies on aided augmentative and alternative communication systems with individuals with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42, 60-74. doi: 10.1007/s10803-011-1212-2 http://hdl.handle.net/1969.1/152916
Ganz, J. B., & Simpson, R. L. (2004). Effects on communicative requesting and speech development of the Picture Exchange Communication System in children with characteristics of autism. Journal of Autism and Developmental Disorders, 34, 395-409.
Heath, A. K., Ganz, J. B., Parker, R., Burke, M., & Ninci, J. (2015). A meta-analytic review of functional communication training across mode of communication, age, and disability. Review Journal of Autism and Developmental Disorders, 2, 155-166. doi: 10.1007/s40489-014-0044-3
International Society for Augmentative and Alternative Communication Position Statement on Facilitated Communication: http://informahealthcare.com/doi/full/10.3109/07434618.2014.971492
National Autism Center, National Standards Project: http://www.nationalautismcenter.org/
National Professional Development Center on Autism Spectrum Disorders: http://autismpdc.fpg.unc.edu/
Jeni Ganz, Ph.D., BCBA-D, completed her bachelor’s and Master’s degrees at Trinity University in San Antonio, Texas. Upon graduating, she took a summer job as a pool manager and lifeguard in Humble, Texas until she was hired as a teacher at Shadow Forest Elementary in Humble Independent School District. In Humble ISD, she worked as a 4th and 5th grade teacher, then was asked to open a class for preschool and kindergarteners with autism spectrum disorders and similar disabilities. She fell in love, particularly with kiddos who had difficulty communicating. After entering the doctoral program at the University of Kansas, under the advisement of Dr. Rich Simpson, Jeni decided to conduct research on the effects of augmentative and alternative communication with children with autism and other developmental disabilities. She has continued with this research agenda, first for 6 years at the University of Texas at San Antonio, and now at Texas A&M University, where she is currently a Professor of Special Education. In addition to spending time with her adolescent and preteen children (when they deign to spend time with her), Jeni enjoys hiking, running, swimming, and sitting on the rocking chair on her front porch listening to the cow lowing.