More than 24,000 children are born with hearing loss in the United States each year. Boys Town National Research Hospital is a national leader in the diagnosis and treatment of children with moderate to profound hearing loss.
Information on Hearing Loss - Genetics and Deafness -
Autism and Deafness: A Psychologist's Perspective
As a beginning psychologist in the late "60s", I had already met some handsome boys who did not often smile or speak. These children had puzzling behaviors such as repeating words or movements. Although they were unable to take care of some everyday things, they had remarkable abilities to line things up, tell the days of any year, or read upside down. But meeting a certain 6-year-old began for me what can be called "Lessons from David" or "Serendipitous Science at School".
David's parents first suspected he had a hearing problem because he did not consistently respond to them, yet appeared bright. Young children who are later diagnosed as autistic (only), may begin developmental evaluations because of "listening" problems. Some children with autism may have what is called "auditory indifference", or the opposite, a sensitivity to sounds. They also have an atypical style of interacting within their world. David would speak occasionally, but his words were flat-sounding.
Although many attempts were made to use the audiologic technology at the time, David's beginning progressive hearing loss was only suspected, and then discounted as part of his isolating autism. David had not been to school; in 1968, there were no educational mandates or programs willing to include him. He came to us to learn "survival" interventions. Some of his head banging and running behaviors at the time are now seen as frustration at his inability to communicate. Impressed with his cleverness and occasional looks from a place so clear and deep within himself, I tried "everything". I was convinced that there was an alternative way to help him tell me what he did or didn't want. From this concept, our school developed the theme of "ABC: Appropriate Behavior through Communication". As a behavioral scientist, I saw that signing had several critical advantages. Signs were icons in movement that captured David's attention. Signs could be exaggerated with larger movements to help him shift his attention (simple pointing did not). Signs could be "held" as a memory and/or visual aid, as opposed to fleeting spoken words. Signs could be shaped with David's hands and "held", unlike words that could not be pulled and corrected from his lips. Initially, the connection between sign, spoken word and object seemed as slow as shaping words.
One day, David promptly imitated a sign, snatched a candy and popped it into my mouth. One indication of learning is teaching it to someone else. David moved my hands as if to sign and again reinforced me - "Good work!" (he signed). Because we always signed and talked, it seemed reasonable to try this approach with other young patients with autism.
Fortunately, the Developmental Institute at Michael Reese Hospital, Chicago, was ahead of itself with a multidisciplinary professional team and a commitment to assist children who could learn regardless of when the laws granted them an education. In 1969, a program was started using simultaneous communication. Parents learned total communication; the "David" school has since evolved to a therapeutic day program. Some students have had hearing impairments related to rubella and other viruses, some with unknown causes. David was eventually fitted with hearing aids as his inherited hearing loss progressed to a profound level in his teens.
In 27 years, I have seen tremendous gains in resources; yet still some families struggle with the same issues that David's family faced. Families today still hear their child is "outstanding", meaning that the professional has not seen other children like theirs. The "systems" - educational, vocational, and medical cannot meet all the needs of multiple impairments in one already established program. Children can "fall between the cracks" because planning systems often rely on establishing a priority list of problems. Treatment options tend to depend upon which diagnosis is made first - deafness or autism.
For example, when a child has a profound hearing loss recognized soon after birth and/or a family history of deafness, early intervention focuses on developing communication. When the symptoms of autism emerge (between 18-30 months) the child may already be in the "hearing impairment intervention" track. Instructors and families may see that the child is not responding to their efforts and think the child is not trying or not able. Worse, families are emotionally stressed by the child's behaviors - limited eye contact, withdrawal or possibly, aggressive behaviors. Grandparents may blame the parents for the child's behaviors, or withdraw support when they do not understand. This is incredibly isolating! The parents may also have a hearing impairment, which limits their ability to interact with support sources and adds to the parents' isolation. Some families come apart when the emotional supports are exhausted. This is the saddest outcome - the separation of families, cultures and opportunities for children.
In contrast, when a child is first diagnosed as autistic, educational priorities focus on behavioral interventions to access social and educational learning, including communication. Hearing screening tests may be attempted. Often, the child is described as "untestable" due to autistic behaviors. It is very difficult for some children with autism to tolerate the sensory demands of the test. They may have atypical responses to sound and touch (headphones); they may even act as if the demands are hurtful or noxious. Unfortunately, other problem behaviors may also prolong the detection of progressive hearing loss because repeated testing is avoided. Medical records show 19 month to 7 year delays before combined diagnoses are made. The child with autism may go to a program already using alternative or augmentative communication. How well the teaching staff and other students understand the child is critical. They may forget to sign directly to the student after gaining attention, sign with poor diction, or not know enough signs. My job has become the "listening" detective, always reminding families and teachers to check problems of attention and hearing. Teacher and family training should be a collaborative effort of learning with the students.
Community training and awareness are a constant issue. Many competent individuals with autism and deafness can work and continue their adult lives in various living arrangements. Being on their own does not mean being alone (from autism and deafness). Coordinating multiple resources should more fairly meet the needs of the individual. Continuing to work with multidisciplinary staff and individual advocates can make significant changes in ultimate outcomes.
I have had an incredible access to individuals, family members and other professionals facing similar struggles through the Autism Society of America. As a moderator of conference panels of parents and professionals, I have witnessed a growing network. I am impressed with everyone's struggles to get more of the pieces of the puzzle necessary for diagnosis and intervention. A remarkable resource is a computer-based list of parents, individuals and professionals interested in autism and hearing and visual impairments. Researchers as well as families in need of local support can access each other by joining the network and releasing their name.
This network is part of the vision of Alan and Dolores Bartel in their efforts to build a "community" for their son who is deaf and autistic. Dr. Margaret P. Creedon, (FAClinP) is a clinical psychologist at the Easter Seal Theraputic Day School, 800 E. 55th St., Chicago, IL 60615, 312 241-5155.
Bibliography
Gordon AG. 1978. Rubella deafness and autism. J. Autism & Child. Schizophrenia 8: 257-259.
Jure R, Rapin I, & Tuchman RF. 1991. Hearing-impaired autistic children. Develop. Med. & Child Neurol. 33: 1062-1972.
Klin A. 1993. Auditory brainstem responses in autism: Brainstem dysfunction or peripheral hearing loss. J. Autism & Develop. Disord. 23: 15-35.
Konstantareas MM & Homatidis S. 1978. Brief report: Ear infections in autistic children. J. Autism & Develop. Disord. 17: 585-594.
Smith DEP, Miller SD, Stewart M, Walter TL & McConnell JV. 1988. Conductive hearing loss in autistic, learning-disabled, and normal children. J. Autism & Develop Disord. 18: 53-65.
The following groups can be helpful to individuals and families adapting to autism and deafness. The national offices can provide information about support groups and resources in your local area.
Autism Society of America
7910 Woodmont Ave.
Bethesda, MD 20814
800 3-AUTISM
Autism Network for Hearing Impaired & Visually Impaired Persons:
Alan and Dolores Bartel
7510 Oceanfront Ave.
Virginia Beach, VA 23451
Phone: (804) 428-9036
Fax: (804) 428-0019
Date Originally Created: Fall of 1989 - The information presented here first appeared in publications of the Boys Town National Research Register for Hereditary Hearing Loss, the National Institute on Deafness and Other Communication Disorders (NIDCD), Hereditary Hearing Impairment Resource Registry (HHIRR), or the Boys Town Research Registry for Hereditary Hearing Loss.
The Boys Town Research Registry for Hereditary Hearing Loss - The Boys Town Research Registry for Hereditary Hearing Loss (Registry) is designed to foster a partnership between families, clinicians and researchers in the area of hereditary hearing loss/deafness through three primary functions. First, the Registry disseminates information to professionals and families about clinical and research issues related to hereditary deafness/hearing loss. Second, the Registry collects information from individuals interested in supporting and participating in research projects. This information is used to support the third function of the Registry - matching families with collaborating research projects.
For more information, contact us at:
Research Registry for Hereditary Hearing Loss
555 N. 30th Street Omaha, NE 68131
800 320-1171 (V/TDD)
402 498-6331 (FAX)