It is apparent that music plays a huge role for wellbeeing among people with Rett syndrome. The responses to a questionnaire sent out to parents of girls/women with Rett syndrome in Sweden show that music is used as medicine: Relatives use music ”against worry and anxiety”, ”as first aid”, ”in connection with visits to doctor or dentist”, ”in order to make contact with the girl and for her to get in touch with her environment” and ”for falling asleep” (Merker, Bergström-Isacsson, 2001).
The results from the same investigation, as well as one from USA (Houtaling, 2003) with a similar result, show that that those taking part in music and/or music therapy can obtain a high quality of life, contribute to identification, perception of own activity/self-esteem, and the sense of belonging to family, society and culture.
Girls/boys with Rett syndrome are often very definite in their choice of music (Holdsworth, 1999). They have their favorite songs, favorite artists, and even favorite recordings. Music preference is highly personal and varies to the same extent as in all others, even if childrens’ songs proved to be significant also in adulthood. Many replace their favorite songs after a while and thus broaden both their internal and external music room (Bergström-Isacsson, 2001; Elefant, 2002).
The favorites can trigger different responses. A song might generate general activity, movement, laughter and communication, while another gives calmness, concentration and relaxation. Both varieties serve their purposes, and are of great importance for the individual (Elefant & Lotan, 2004).
One can not be absolutely sure that the observed and interpreted responses on the outside correspond with the inside though. This applies especially if the person seems to be ”too happy". It can instead be a sign of ”overexcitement” which can then be difficult to stop (Julu, Kerr, Apartopoulos, Al-Rawas, Witt Engerström, Engerström, Jamal, & Hansen, 2001; Mounth, Hastings, Reilly, Cass & Charman, 2001).
Results from one study have been able to show that music and vibroacoustic stimulation affect the brainstems control of the autonomic nervous system. (Bergström-Isacsson, 2005; Bergström-Isacsson, Witt Engerström & Julu, 2007) On the basis that the brainstem of girls/boys with Rett syndrome generally have a poor control function, it is difficult for them to stop a response triggered by activating music. If one on the other hand use music that soothes and touches it can work the opposite way. That occurs when there is an increase in the brainstem's ability to control the autonomic nervous system, and the body can have a moment of rest and recovery.
It is established that it is difficult to know from the outside how calming and activating music affects the inside (Bergström-Isacsson, 2005; Bergström-Isacsson, Witt Engerström & Julu, 2007).
Music also serves as carrier of memories and emotions, and can therefore partly explain the emotions that may be associated with certain pieces of the music played.
We sometimes talk about music as a language, and in terms of Rett syndrome, music can be considered to be their primary language, and as well work as a key to their emotions and hidden abilities. Words and experiences that are carried out with the help of a melody create a better understanding than words only (Bergström-Isacsson, 2001, 2005; Trevarthen, 1997).
The joy and motivating factor that music can bring is invaluable in situations such as dialogue, communication and learning. Music can create space, and can work as one of the tools the girls/boys need to be able to show their abilities (Coleman, 1987; Elefant, 2002; Merker & Wallin, 2001).
One can look upon music as a cognitively complex product of human culture. The music provides a window where the girls'/boys' cognitive capacities can be perceived by people around them, and should therefore be offered in as many contexts as possible (Merker & Wallin, 2001; Trevarthen & Burford, 1995).
Below is a list of most of the literature about music, vibroacoustic and Rett syndrome. Here are also some other items that may be of interest.
The list will be updated when something new is published, and I also inted to write short summaries of the contents of the papers.
Pukanen, M., & Ala-Ruona, E. (2012). Contemporary Vibroacoustic Therapy: Perspectives on Clinical Practice, Research, and Training. Music and Medicine 2012 4:128, 128-135.
VAT is known among certain music therapists, but not everyone knows the method and even fewer use it. The method is better known in Norway and Finland, and in the article the authors describe how a VAT training program has been built up in three stages in Finland. These three stages provide a total of 20 ECTS credits (European Credit Transfer and Accumulation System).
It is still a mystery that the knowledge of how low frequency sound affects our bodies not yet is part of the music therapy education curriculum in Sweden, but I hope this will change eventually.
Ball, C. Music therapy for children with autistic spectrum disorder. Bazian Ltd (Ed).
Bergström-Isacsson, M. (2001). Musik och Rett syndrome - en musikterapeutisk tolkning. Unpublished Bachelor, Royal College of Music, Stockholm.
Bergström-Isacsson, M. (2005). Musik och Vibroakustik vid Rett syndrom, en undersökning av autonoma responser. Royal College of Music, Stockholm.
Bergström-Isacsson, M., Julu, P. O. O., & Witt Engerström, I. (2007). Autonomic responses to Music and Vibroacoustic Therapy in Rett Syndrome. Nordic Journal of Music Therapy, 16(1), 42-59.
Bergström-Isacsson, M., & Larsson, G. (2008). The Musement. Music/Motor function: "The Musement"- amusement with music and movement. Östersund: Swedish Rett Center.
Bergström-Isacsson, Märith (2011): Music and Vibroacoustic Stimulation in People with Rett Syndrome- A Neurophysiological Study. Doctoral Thesis. Aalborg University, Denmark and Rett Center, Sweden.
Bernardi, L., Porta, C., & Sleight, P. (2006). Cardiovascular, cerebrovascular, and respiratory changes induced by different types of music in musicians and non-musicians: the importance of silence. Heart, 92(4), 445-452. Epub 2005 Sep 2030.
Bernardi, L., Sleight, P., Bandinelli, G., Cencetti, S., Fattorini, L., Wdowczyc-Szulc, J., et al. (2001). Effect of rosary prayer and yoga mantras on autonomic cardiovascular rythms: comparative study. [Scientific]. Bmj, 323, 1446-1449.
Cass, H., Reilly, S., Owen, L., Wisbeach, A., Weekes, L., Slonims, V., et al. (2003). Findings from a multidisciplinary clinical case series of females with Rett syndrome. Regression in individuals with Rett syndrome. Dev Med Child Neurol, 45(5), 325-337.
Coleman, K. (1987). Music Therapy in Rett Syndrome. Educational and Therapeutic Intervention in Rett Syndrome. IRSA, Clinton, MD, 93–110.
Coleman, K., & Handsell, N. (1988). Rett Syndrome: A Challenge for Music Therapists. Music Therapy Perspectives, 5, 52-56.
Damasio, A. (2010). Self Comes to Mind: Constructing the Conscious Brain: Pantheon.
Elefant, C. (2002). Enhancing communication in girls with Rett syndrome through songs in music therapy. Unpublished PhD thesis, Aalborg University.
Elefant, C., & Lotan, M. (2004). Rett syndrome: dual intervention–music and physical therapy. Nordic Journal of Music Therapy, 13(2), 172-182.
Elefant, C., & Wigram, T. (2005). Learning ability in children with Rett syndrome. Brain Dev.
Go, T. (2007). Medical Music Therapy Based on Baby Science (Baby-Science-Based Music Therapy) and Assistive Technology for Children. Current Pediatric Reviews, 3(3), 198-206.
Go, T., & Mitani, A. (2009). A qualitative motion analysis study of voluntary hand movement induced by music in patients with Rett syndrome. Neuropsychiatric Disease and Treatment, 5, 499-503.
Hadsell, N. A., & Coleman, K. A. (1988). Rett Syndrome: A challenge for music therapists. Music Therapy Perspectives, 5, 52-56.
Hill, S. (1997). The relevance and value of music therapy for children with Rett syndrome. British Journal of Special Education, 24(3), 124-128.
Hooper, J. (2002). Is VA therapy, music therapy. Music Therapy Today.
Houtaling, C. (2003). Music and Rett Syndrome: A Survey from the Parental Perspective.
Juslin, P. N., & Sloboda, J. A. (2010). Handbook of music and emotion: theory, research, applications: Oxford Univ Pr.
Lindberg, M., & Oresten. (2003). Musikanvändandet hos sjukgymnaster inom barn- och ungdomshabiliteringen. [Research]. Nordisk Fysioterapi, 7, 13-20.
Lotan, M., Moe-Nilssen, R., Ljunggren, A. E. and Strand, L. I. (2009): Reliability of the Non-Communicating Adult Pain Checklist (NCAPC), assessed by different groups of health workers. Research in Developmental Disabilities, 30, pp. 735-745.
Teacher training, I. A study of music therapy as a treatment
McCarthy, John, Geist, Kamile, Zojwala, Rashida and Schock, Molly Z (2008): A survey of Music Therapist's work with Speech-Language pathologists and experiences with Augmentative and Alternative Communication. Journal of Music Therapy 45, 4, ProQuest Central p. 405.
Merker, B., Bergström-Isacsson, M., & Witt Engerström, I. (2001). Music and the Rett disorder: The Swedish Rett centre survey. Nordic Journal of Music Therapy, 10(1), 42-53.
Merker, B., & Wallin, N. L. (2001). Musical responsiveness in the Rett disorder. In A. Kerr & I. Witt Engerstrom (Eds.), Rett syndrome and the developing brain (pp. 327-339). New York: Oxford University Press.
Montague, J. (1988). Music Therapy and the Treatment of Rett syndrome: Glasgow: UK Rett Syndrome Association.
Panksepp, J., & Bernatzky, G. (2002). Emotional sounds and the brain: the neuro-affective foundations of musical appreciation. Behavioural processes, 60(2), 133-155.
Pillion, J., Rawool, V., Bibat, G., & Naidu, S. (2003). Prevalence of hearing loss in Rett syndrome. Developmental Medicine and Child Neurology, 45(05), 338-343.
Sokira, J. (2007). Interpreting the communicative behaviours of clients with Rett syndrome in music therapy: A self-inquiry. In M. Anthony (Ed.), Qualitative inquires in music therapy: A monograph series (pp. 103-131). Gilsum: Barcelona Publishers.
Trevarthen, C. (1997). Musical Interaction in Rett syndrome: A comparison with normal infants and the effects on Perturbation. RS News Volyme, 3.2, 1.
Trevarthen, C., & Burford, B. (2001). Early infant intelligence and Rett syndrome. In A. Kerr & I. Witt Engerstrom (Eds.), Rett disorder and the developing brain (pp. 303-326). New York: Oxford University Press.
Trevarthen, Colwyn and Daniel, Stuart (2005): Disorganized rhythm and synchrony: early signs of Autism and Rett syndrome. Brain Dev, 27, pp. 25-34.
Wesecky, A. (1986). Music therapy for children with Rett syndrome. Am J Med Genet Suppl, 1, 253-257.
Wigram, T. (1991). "Music Therapy for a girl with Rett's Syndrome: Balancing structure and Freedom. In K. Bruscia (Ed.), "Case Studies in Music Therapy" (pp. 39-55). Penn. USA: Barcelona.
Wigram, T. (1995). Assessment and Diagnosis in Music Therapy. In T. Wigram, B. Saperston & R. West (Eds.), The Art and Science of Music Therapy: A Handbook: Harwood Academic Publications.
Wigram, T. (1996). The Effects of vibroacoustic Therapy on Clinical and Non-Clinial Population. London: London University.
Wigram, T., & Dileo-Maranto, C. (1996). Vibroacoustic therapy in the treatment of Rett syndrome Music Vibration and Health (pp. 149–155). Cherry Hill, NJ: Jeffrey Books.
Wigram, T., & Dileo-Maranto, C. (1997). Music vibration and health. Cherry Hill, NJ: Jeffrey Books.
Wigram, T., & Lawrence, M. (2005). Music therapy as a tool for assessing hand use and communicativeness in children with Rett Syndrome. Brain and Development, 27(Supplement 1), S95-S96.
Witt Engerström, I., Larsson, G., Bergström-Isacsson, M., Wesslund, B., Qvarfordt, I., & Jochym-Nygren, M. (2005). Rett syndrom - Hur kan det se ut och vad kan man göra? Östersund: Rett Center.
Yasuhara, A., & Sugiyama, Y. (2001). Music therapy for children with Rett syndrome. Brain and Development, 23, 82-84.