Dual Diagnosis: Deaf-Autism
By Melissa N. Peterson
This article was first published in the Summer 2013 issue of the H&V Communicator
An example of this is telling a student to “sit here” and pointing to a chair, instead of saying “Find a seat.” “Find a seat” is confusing to children with ASD and they may wander around to find one but may not know what to do with it once they’ve found it.
Autism Spectrum Disorder, commonly referred to as ASD, is a range of developmental disabilities that impact an individual’s social and communication skills as well as their behavior. When the topic of autism comes up in conversation, many individuals think of Dustin Hoffman’s character from the movie Rain Man that depicts a savant’s incredible skills in a few areas such as counting cards or memorizing facts about presidents. This is only one group on a wide spectrum.
The prevalence of autism is on the rise. According to the Centers for Disease Control (CDC), the Autism and Developmental Disabilities Monitoring (ADDM) Network Data showed 1 in 150 children were identified with autism in 2002. In 2008 that number had increased to 1 in 88. Organizations such as the Autism Society and Autism Speaks have been formed to support individuals and families impacted by this diagnosis, and research has been taken to the next level. Due to these startling statistics, President Obama has committed to ensuring adequate health care and support for these individuals. He encourages “all Americans to learn more about autism and what they can do to support individuals on the autism spectrum and their families.” This is a tremendous step forward for individuals with ASD and their families.
As the overall prevalence of autism increases, so does that of dual diagnosis of deaf/hard of hearing and autism. The statistics from 2007 were 1 in 81 deaf/hard of hearing (d/hh) persons were diagnosed with autism (GRI, 2008) compared to 1 in 59 d/hh just two years later (GRI, 2010). While the research and support for ASD has increased significantly, the research and resources are still limited for the dual diagnosis of ASD and d/hh. Effective professionals need to be knowledgeable and experienced in both deaf/hard of hearing education as well as autism; and that pool of knowledgeable professionals is small indeed.
Programs addressing the needs of d/hh students with autism are being developed around the country. One is Rocky Mountain Deaf School (RMDS) in Colorado. The primary focus for these programs is communication and behavior. Sign language has been successfully used with children who have autism for more than 40 years (Szymanski, Brice, 2008) regardless of their hearing status. Since RMDS uses American Sign Language with all students, the school utilizes this successful approach to meet the needs of d/hh and ASD students. Programs like this focus on the individual needs of each student. Some students work on reading and responding to nonfiction texts while others learn how to sort objects.
On a personal note, I was moved to the kindergarten class at RMDS where one student had severe behavioral problems as well as significant delays in language and social skills. He was non-compliant and refused to do work given to him. When he was given work, he would often rip it up, throw it, hit or kick the adult, throw items including chairs, and then he would curl up in a ball on the floor. I taught this child through second grade in the general classroom setting where behaviors continued even with a one-to-one paraprofessional to give him extra support and undivided attention. Work became completing puzzles or sorting objects, simple worksheets with pictures to match or color. The goal became compliance rather than developing academic skills as behaviors became more severe as he became older, bigger and stronger.
Rewards: Planned and Random
Everything changed in 2008 when RMDS opened the Plus Program for children who have special needs with the primary need being autism. In this setting, I was able to focus on his needs specifically and a new reinforcement program was developed for him. I tried a token board that is commonly used for children with special needs so he knew he would earn a break when he got six tokens of smiley faces on his board. This was ineffective for him because he wanted complete command over his reward and would change his mind repeatedly so he was controlling the situation. It is critical that a behavior plan use items the child likes as reinforcers, but it becomes ineffective if the child has too much control of the program. The parents became involved and would take away toys when he was noncompliant at school. We communicated everyday to revisit and revise our strategies.
Eventually I tried random rewards using the concept of gambling; no one knows when they will win so they continue playing in hopes of hitting the jackpot. This method was successful for him only with video clips as his reward. He was required to do a simple task then was rewarded with watching a short clip of Tom and Jerry or another cartoon he enjoyed. Sometimes he had to do one task of matching two objects, and then he watched three seconds of a clip. Other times, he would complete a whole page of work before he watched a minute of a video. It was completely random and it kept him motivated. However, this did not happen overnight. There were several days at the beginning when he would have a tantrum, and then shut down, lying on the floor and pulling his head into his shirt like a turtle for the entire day. We tried to coerce him out, but he saw no reason to do anything. He didn’t understand cause and effect: he couldn’t connect his work to earned rewards. When he eventually came out of his shell and was given the work again, he initially became mad. Finally, sometimes not until the next day, he would complete a task and be able to watch a clip. After a few successful work tasks followed quickly by the reward of watching a video clip, he began to make the connection.
This method was used with him until he gained control over his behavior enough to be able to begin earning tokens when he was compliant during a class period. If he had all the tokens at the end of the class, he earned a break. He began doing more academic work focusing on math, reading and writing. His tantrums had faded completely and instead when he didn’t want to do something he would make a grimace and perhaps hit his fist on the desk, cross his arms and turn away from his para but he would eventually comply. The token board progressed further; now he earned a smiley face for each class period if he earned all of his tokens. Depending on how many smiles he earned for the entire day, he earned something special at home. Then the smiley face chart became a piece of paper with the total number of smiley faces written on it for the day and he was always proud to bring home the slip of paper with his total. Over the years he made tremendous progress from needing immediate reinforcement to delayed reinforcement.
He and his family have since moved to another state where he attends the school for the Deaf. He is now able to work in a mainstream placement with support and exhibits minimal behavior problems. He continues to have his stubborn moments but he is functioning in a regular classroom at a Deaf school. His favorite class is science. I am proud of him and I am proud to say I was his teacher for six years. It had its challenging moments but his successful transition to a new school made it all worthwhile. The key to his success was finding a system that worked for him and it required many trials and errors but we figured it out. I hope to continue providing support for students at RMDS, as needed throughout the state through the Colorado Department of Education Deaf Mentor program, and hopefully at some point, nationwide.
Research and firsthand experience identify strategies that increase success of children who have ASD and are d/hh. These strategies are beneficial in the classroom, at home, in the community and in work settings in the future. Rooms need to be set up with clear boundaries and identification of the purpose of each space. In a classroom, there needs to be an area for independent work and group work. Students who have ASD and are d/hh are able to comprehend and follow brief clear statements for instruction and directions paired with visuals when possible. An example of this is telling a student to “sit here” and pointing to a chair, instead of saying “Find a seat.” “Find a seat” is confusing to children with ASD and they may wander around to find one but may not know what to do with it when they’ve found it.
Children who have ASD are visual learners, which is one reason many succeed with sign language. However, this can also be detrimental when classroom walls are full of informational posters. A child with ASD becomes transfixed by the visual stimuli and is unable to attend to instruction. Therefore, it is important to limit the amount of visual clutter on the walls, shelves and furniture. Many individuals with ASD crave routines and when routines are disrupted it can be very difficult for them to adjust and function normally. As a result most professionals recommend keeping routines the same in multiple settings and trying not to disrupt them. Some believe it is important for children to learn to adjust to change and consequently do not adhere to strict routines. Individualized visual schedules, either in print or pictures, are important for individuals to see what their schedule is for the day, especially when there are changes. Imagine having your own schedule set up for the day, and someone came in and changed your appointments earlier or later, deleted one completely and added something else. You would be stressed out, uncomfortable and probably agitated. That is precisely what happens to these students even if the schedule is the same everyday. Children do not have a firm concept of time so they do not realize when it is time for one class to end and the next to begin. A visual system such as a sand timer serves to prepare students when a class or activity is almost complete.
These are just some simple strategies for interacting with children who are Deaf/hard of hearing and have ASD. For maximum effectiveness, the same strategies should be used at home and school, as well as in the community. There is so much more to be learned about these individuals and how best to meet their needs. As President Obama stated, our need to understand more about how best to work with this community is something all of us can support.
References:
Centers for Disease Control and Prevention, March 29, 2012. Identified prevalence of autism spectrum disorders ADDM network 2000-2008 combining data from all sites. https://www.cdc.gov/ncbddd/autism/data.html
Gallaudet Research Institute, 2008. Regional and national summary report of data from the 2007-2008 annual survey of deaf and hard of hearing children and youth. Washington, DC: Author, Gallaudet University, and the Regional and national summary report of data from the 2009-2010 Annual Survey of Deaf and Hard of Hearing Children and Youth. Washington, DC: Author, Gallaudet University.
The White House Office of the Press Secretary, 2013. Presidential Proclamation: World Autism Awareness Day, 2013. Washington, DC: The President of the United States of America. Retrieved from http://www.whitehouse.gov/the-press-office/2013/04/01/presidential-proclamation-world-autism-awareness-day-2013
Szymanski, C., & Brice, P., 2008. When autism and deafness coexist in children: What we know now. Odyssey, 9(1), 10-15.