In trying to understand the behavioral challenges in CHARGE, the first step has involved trying to link the physical manifestations to behavioral. For example, many children with CHARGE are deafblind. It is known that autistic-like behavior can occur in persons who are deafblind. However, even those children with CHARGE who are not deafblind demonstrate the behavioral challenges. We have also considered possible links with the vestibular dysfunction in CHARGE, with communication difficulties and frustrations, and with early experiences of pain and hospitalization. While these remain possible links, they have been challenged by those who can point to cases where there are behaviors but no link.
The second step has been to observe and consult on as many children with behavioral difficulties as possible. This has taken place at conferences, from communications with parents and professionals, from video, and numerous consultations that my students and I have provided. This has helped to show that there were commonalities in the behaviors and it became easier to recognize certain behaviors as "typical" in CHARGE.
The third step has involved conducting research studies to better understand the behavior. The following studies have been published or accepted for publication:
The following are some published studies of CHARGE behavior from our lab:
Reda, N. M. & Hartshorne, T. S. (in press). Attachment, bonding, and parental stress in CHARGE syndrome. Mental Health Aspects of Developmental Disabilities.
Wachtel, L. E., Hartshorne, T. S., & Dailor, A. N. (in press). Psychiatric diagnoses and psychotropic medications in CHARGE syndrome: A pediatric survey. Journal of Developmental and Physical Disabilities.
Hartshorne, T. S., Nicholas, J., Grialou, T. L., & Russ, A. M. (2007). Executive function in CHARGE syndrome. Child Neuropsychology, 13, 333-344.
Hartshorne, T. S., Hefner, M. A., & Davenport, S. L. H. (2005). Behavior in CHARGE Syndrome: Introduction to the series. American Journal of Medical Genetics, 133A, 228-231.
Hartshorne, T. S., Grialou, T. L., & Parker, K. R. (2005). Autistic-Like Behavior in CHARGE Syndrome. American Journal of Medical Genetics, 133A, 257-261.
Hartshorne, T. S., & Cypher, A. D. (2004). Challenging behavior in CHARGE syndrome. Mental Health Aspects of Developmental Disabilities, 7(2), 41-52.