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 - Living With Autism and Deafness

We knew Craig was deaf by the time he was two months old. Nevertheless, we went to several medical centers to confirm his hearing loss. But, my husband, Alan, and I suspected other problems; so we continued to go to different doctors to get a firmer grip on what was going on in Craig's early years. Craig's motor developmental milestones were within the normal range; he sat up at 6 months and walked at 1 year. However, he also had some unusual behaviors including staring at lights and arching his back. Craig was not interested in other people or in learning to sign to communicate.

Craig's educational journey began at 18-months of age in a self-contained hearing impaired class. At age 3, he moved into a noncategorical preschool class for language delayed children. After two years of some progress, our whole family traveled to Gallaudet College (now University) in Washington, D.C for a summer learning program. It was a wonderful experience! We met families from all over the country; we were not alone. However, it became more apparent that Craig was very different from the other children. Even there, no one seemed to know what to do with Craig; no one could agree on a diagnosis except for his profound hearing loss. Everyone agreed he was "unique". "Autistic tendencies" were occasionally described.

Once again, at age 5, Craig returned to a hearing impaired self-contained class. The teachers were not prepared to deal with this "strange little boy" and Craig made another move to the Hampton School for the Deaf and Blind as a day student for three years. The staff's good intentions and best efforts could not compensate for the lack of training and skills needed to deal with the various manifestations of his autism and deafness. Although there was a multi-handicapped program at the school, and an autism program in the community, neither could adequately provide nor would combine resources to meet his needs. He regressed educationally, behaviorally and socially.

Encouraged by yet another teacher, we searched for a program that would address Craig's unique behaviors. However, by this time, we were almost pushed to our "wit's end". We agreed that Craig needed a very structured 24-hour program using sign language in an environment also using behavior modification. This required residential placement at the Grafton School in Winchester, VA, a long 4-1/2 hours from our home. For 11 years, Craig remained away except for home visits every six weeks. We tried to visit him as frequently as possible at the school, in his "success" or learning place. We were somewhat heartened at his move to a group home with seven other adolescents. This allowed Craig to participate more in a community, but not his home community.

Craig began his work travels through Grafton's Vocation Technology Program. He has worked in a laundry, grocery store, and at the social services office. His last efforts in that community were as a volunteer at the local hospital. He spent two hours a day unloading and distributing supplies, and folding towels for the operating room in the laundry. He seems to enjoy his work and the staff is expected to use sign language with Craig. However, due to a continuous turnover of staff, each new person has to be trained in both sign language and to work with Craig's autistic behaviors. This opportunity has helped Craig to be much more "tuned in" to the world around him and significantly helped him move forward with communication skills.

Now, at age 20, Craig has returned to his home community. He is living in a supervised apartment and is working at a new job. Craig is icing and decorating cupcakes at a bakery. This has been made possible through combining efforts from the Virginia State Department of MR/MH/SAS for his adult service needs and the continuing efforts of the Department of Special Education to provide a one-on-one aide who will act as interpreter and job coach. It has been a success because the Grafton staff helped him through the transition and smoothed the way for the many changes that are difficult for someone with autism. He is working at Skill Quest to develop skills he will need in a community-based supported employment position. This is "our dream" come true.

While Craig may have his "work" day planned, he can still share so many other things with us in the community. Like many families, ours is sports oriented. Craig will continue to have options because he is an excellent swimmer, enjoys biking and a number of other activities like skating and skiing. Craig has joined his first team sport, soccer, sponsored by Special Olympics. Some evenings will find Craig pursuing new skills at a computer class offered in a program for adults with developmental disabilities at Old Dominion University. And, any evening, Craig is now successful in sending dinner invitations and other messages home via fax machine.

The following are comments by Dr. Margaret Creedon:

The combination of hearing impairment and autism, or any other dual diagnosis, challenges parents and educators, as well as providers of medical care, job training, and residential services. Craig's experiences of trying different programs in different schools were driven by good intentions and serious efforts to meet his unique needs. Sadly, these are repeated far too frequently by others in similar situations. Roadblocks include: (1) limited or no communication among different agencies helping the same individual, and (2) the dilemma of health and educational systems of trying to prioritize disabilities and ultimately dealing with only one at a time. The combination and coordination of resources should be more cost effective as well as more appropriate. Witness Craig's growing independence, successful work experiences and increasing ability to communicate.

Craig's parents, Dolores and Alan Bartel, have met with many professionals and parents. They have noted similarities and issues among those who have both deafness and autism that are different from those who have either condition alone. Starting in 1992, they formed a computer-based network based in their home. They have joined with others in addressing the unique challenges of persons with autism and sensory impairments. The combined network is recognized and supported as a formal committee of the Autism Society of America. At the ASA Annual Conference, parents and professionals meet to work on goals of sharing information and encouraging research.

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: Spring of 1996

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)