By Eric Sherman
In its 2009–2010 Annual Survey of Deaf and Hard of Hearing Children and Youth, the Gallaudet Research Institute estimates about 40 percent of children with hearing loss exhibit another disability and notes the prevalence of Autism Spectrum Disorder (ASD) to be 1 in 59. Early intervention is critical for the development of speech, language, communication skills and learning. Some families are fortunate to discover their child’s hearing loss at a young age, so an early intervention can be implemented to help their child stay on track with their hearing peers. What happens when you put your child through a cochlear implant surgery, spend years of AVT or speech therapy and it seems your child is making very little progress?
This was the case with our son. Two years of AVT, after receiving a cochlear implant, it was becoming increasingly frustrating to find our son was nowhere near his hearing peers in communication and language skills. We knew language development could be a long process, but something else was wrong. Our AVT thought it best to seek additional medical evaluations to see if there was something else prohibiting our son’s language development. After having evaluations done, our son was diagnosed as being on the Autism Spectrum or having ASD. Having a child with hearing loss takes lot of work and commitment by a family, add autism to the mix and it is like trying to solve a puzzle without knowing what pieces are in play.
With intensive behavioral and speech therapy over the years, our son has done well. He has become more verbal and can certainly communicate his needs and wants. What is difficult is unlocking the doors into his learning style. There is this blurred line between his autism and hearing disability. When our son has difficulty doing school work; we are always questioning whether he is hearing the information, does he have a problem processing the information or is he just not interested in the material because it has no real meaning to his everyday life.
Our son has been lucky, over the past 3 years, having a teacher who is very creative and skillful in teaching and engaging her students in interesting ways. Unfortunately, we have had DHH teachers, audiologists and other service providers struggle to help our son because of their lack of knowledge, training or willingness to learn more about ASD.
It’s clear from our experience, our school district is in need of more information and training of how to educate a child with a dual diagnosis of hearing loss and ASD. They seem to address the disabilities individually as oppose to collectively, and how they may impact a child’s overall education. We have a school audiologist who wanted to create a goal for our son where he tells his aid or teacher when his CI processors are not working. This is a good goal and skill for a child with hearing loss. Add autism to the mix and the goal may become very complex and difficult to achieve.
A child with ASD may have to be taught what it means for their processor not to be working and then trained what to do after they determine they are not working. Furthermore, generalization of whether the processor is “working or not working,” “broken,” or “on or off” could be confusing and difficult to understand. Our son would consider his processor being “on” if his headpiece was attached to his head. Also, a child with autism might like the silence and prefer not to notify anyone their processors are off.
The dual diagnosis of hearing loss and ASD has been documented for the past 20 years; however, research and clinical guidelines on how to identify and teach young children with this dual diagnosis are sparse. School professionals and educators need more tools and training to better equip the growing number of children afflicted with ASD and hearing loss. Both Advance Bionics and Illinois State University have done work in this area addressing this issue and calling attention to the need for better diagnostic tools, early intervention and training of education professionals. Significantly more needs to be done!
More about Ci Wear
Ci Wear is a patented specialty shirt designed to secure cochlear implant processors or other mobile/hearing devices, adding a layer of protection to prevent wires from being snagged or entangled. Shirts are manufactured in the USA and are available in youth and adult sizes. www.ciwear.com.