Research Collaborations in Music Therapy

I was invited to give a talk to the Massachusetts Music Therapy Alliance (MMTA) in Weston MA on December 8, 2012.  The theme of all MMTA talks this year is Collaboration.  In my talk, I spoke about collaboration in music therapy research. 

I large point I made in my talk was on the importance of recognizing expertise in music therapy and in other fields of practice.  As individuals (music therapists), we cannot be expected to  excel at all that we do.  To be able to reach out to others and collaborate in our work is a unique and valid element for good practice.  When it comes to research, there are multiple layers involved in producing meaningful outcomes.  There is a need for a team of people who can work together to produce the best possible research related to the work at hand. As music therapists we have special skills in understanding musical concepts, individual (participants) needs, behavioral / psychological normality, use of space/ time, and session structure.  With all of these areas of skill in music therapy, the potential for great contributions to research is unbounding.  Music therapists do however rely on other experts (non-music therapists) to contribute to the analysis, writing, testing measures, involved in the research process.

When reviewing the literature in the field I have found that, the majority of music therapists work with other music therapists in order to produce research.  Furthermore, much of that research is anecdotal and includes small samples and case studies.  I think that with collaborations with experts outside of the field of music therapy more expansive and meaningful contributions can be made to the literature.  I don't mean to say that research produced solely by music therapists isn't meaningful, however I would like to indicate the potential of reaching broader audiences and scientific communities through collaborative research. 

From conversations with other music therapists, it seems that many clinicians are interested in participating in research, but don't know where to begin.  I think that if music therapists reached beyond music therapy lines that research could be produced more quickly and scientifically.  Someitmes we work better when we are encouraged and supported by others in our process.  We all have so much to contribute to the world and we don't need to do it all alone.

A link to my presentation has been posted on the MMTA page  http://massmusictherapy.org/?page_id=843

Please feel free to take a peek at the presentation. Perhaps I will further develop this presentation for other forums.

Enjoy!

Conference Report

I recently wrote a report on my the Northeast Music Cognition Group Meeting held at Boston University on November 17, 2012.  The report has been posted on the Music Therapy Research Blog "bringing current research to music therapy clinicians". 

Here is the link to the report:  http://www.musictherapyresearchblog.com/?p=1399

AMTA and NEMCOG (applied science and research)

I recently presented my research on Musical Echolalia and Non-Verbal Children with Autism at two different venues.  On October 13, 2012 I presented a poster of my topic at the American Music Therapy Association National (AMTA) Conference in St. Charles, Illinois.  On November 17, 2012 I presented an eight-minute talk of the same topic at the North East Music Cognition Group (NEMCOG) at Boston University in Boston, Massachusetts.  Just to note, I am writing a guest article on the NEMCOG meeting for the “Music Therapy Research Blog,” and will provide a link to my article here once it is published.

            While I presented the same topic at each venue, the remarks and inquires I received from the conference attendees were both divergent and unique.  It was interesting for me to reflect upon the two experiences and realize the different lenses in which researchers at NEMCOG and clinicians at the AMTA conference viewed the research.  Attendees of the AMTA conference is mainly comprised of music therapy professionals and students while the NEMCOG meeting is primarily researchers.  Personally, I consider myself as a researcher and clinician with greater depth of history as a clinician. 

            The main differences that I noticed among the comments from music therapists  at the AMTA conference were that they hoped to see stronger clinical outcomes in my current research.  I explained that my initial findings were lead to the need for a protocol that tests the clinical implications of musical echolalia.  While I explained that my findings indicated social outcomes the music therapists wanted to see how the findings could be used in a traditional clinical setting. 

            On the other side of the coin, the researchers at the NEMCOG meeting commented positively at the novelty of my findings and said that the outcomes spoke clearly to the uniqueness of imitation and music among children with autism, and in a way presented a strong case against the mirror neuron theory.  Many of the comments of the researchers were steeped in topic specific answers and related to the current findings in the field.   The questions that the researchers asked me were specific in their relation to the definition of imitation and how I defined it specific to my work.

            It seemed that the main differences among the response of my two presentations were that the music therapists were looking for more clinical depth and had a canvas of questions related to the breadth of the work, while the researchers at NEMCOG were impressed with the novel findings and asked questions that were very scientific in nature.  Philosophically speaking, these questions presented at the two meetings could all be the same with just a different dialect to express the inquiry.  In a way I believe that music therapists are researchers, while researches also delve into applied work; ultimately, I believe there is a common mission between the two roles.   One common thread between both meetings asked when and where the work would be published.  I am glad that this question was raised because it encourages me to move forward and produce this work more widely to the public.

American Chinese Medical Exchange: Autism

Conference Proceedings

Biomedical Advances of Autism 2012

American Chinese Medical Exchange Society

On August 26, 2012 the American Chinese Medical Exchange Society www.acmes.net in collaboration with McLean Hospital, Harvard Medical School hosted a one-day forum entitled Biomedical Advances of Autism 2012.  This event introduced a rich agenda of speakers, comprised mainly of researchers and medical doctors who practice traditional western and traditional Chinese medicine with individuals who have autism. 

I found this conference to be both thought provoking and inspiring.  I attended the conference with friend Dr. Jane Richardson, ART-BC, who is an art therapist and colleague at Lesley University.  Jane and I traveled to Beijing, China with in 2009, where we were invited to both present our work at the International Creative Arts Therapy Conference.  In result of our experience in China, we have a co-written book chapter, which will appear in an edited book to arrive later this year.

The current conference, Biomedical Advances of Autism 2012, allowed the opportunity for the audience and its speakers to consider scientific and real basis for working with children with autism, through the very ancient and very holistic lense of traditional Chinese medicine.  The book Chapter that mentioned that Jane and I have collaborated on exemplifies this view in its relation to the expressive / creative arts therapies – a multi-sensory whole body engagement for the child with autism. 

The keynote speaker at the current conference was Dr. Martha Herbert who shared her new book, “Autism Revolution.”  In her keynote talk Herbert spoke of the timeliness of the conference and the importance of listening / working with / examining the whole child – a view that Traditional Chinese Medicine has long employed.  With respect to traditional Chinese medicine – considering the meridians and the five element theory in relation to the many aspects of life – and how the child with autism operates may seem foreign to many, however, it is an ancient practice that has been used for centuries.  Herbert’s talk seemed to consider the treatemetn of autism with a  holistic view – Herbert considered neurology while also looking at the impact of stress, biology, and the environment upon the child.

What stood out the most to me was when Herbert began to note the sharp rise in the autism diagnosis. She suggested that individuals with autism may be trying to tell the work something – like “the canary in the cole mine,” she said…. “should autism be the world telling us about the human race?”

I think that regardless of what happens with individuals with autism, that it is important to listen with heart, hands, voice, and ears – engage the whole body and listen with the whole body – as we may not all speak or understand the same language, we might as well be open to exploring other options if we want to learn form one another… 

There is something to be said for exploring traditional Chinese medicine for children whit autism.  There is published literature on the use of acupuncture,  traditional Chinese herbs, and traditional Chinese movement practices (tai chi, qi gong) in helping children with autism manage some difficulties - yet more needs to be explored.  As a music therapist and expressive arts therapist - I see that there is a correlation between Chinese medicine and the arts - and can quickly identify helping properties for the child with autism.  I look forward to reading new literature on this topic and writing and exploring such applications in my own work.

Thank you for the American Chinese Medical Exchange Society for hosting such a wonderful event!

Conference Preceedings: Perspectives from the Jouney / The Autism Forum at the Boston Higashi School

On April 26^th, 2012 the Higashi School of Boston held a one day Autism Forum at the Hilton Boston / Dedham entitled “Perspectives from the Journey.”  The forum hosted four presenters who each shared an hour-long talk on their perspective of either being a person with autism, of researching autism, and / or researching “hot” topics on or related to autism.  Each talk at this conference, presented itself a master class of thought provoking information from leading experts.

 The presenters included: Dr. Temple Grandin, Dr. Margaret Bauman, Dr. Stephen Shore, and Mr. Seth Mnookin.

After the morning registration, a welcoming breakfast buffet, and opening remarks from the principle of the Higashi School, the first speaker Dr. Temple Grandin was graciously introduced. 

Dr. Grandin’s talk was entitled, “Autism in My Sensory Based World.”  According to the introduction by the principle of the Higashi School, Temple Grandin, PhD, is known as “the most famous person with autism.”  Grandin has published several books, been a strong advocate for autism, has been portrayed in film, and has been called upon to consult on many occasions.  In her talk Grandin shared several stories of her life as a person with autism, the schools she attended (Beaver Country Day School), her sensory processes (the famed Squeeze Machine), her ability to shift attention, and tune into specific stimuli.  She referenced current literature in the field, shared images of her young life, shared images of her current MRI, and research images on the brains of others with autism.

In the talk Grandin focused on information processing –that information is often “coming in to fast” for the person with autism to process, causing sensory abnormalities and difficulty with processing information.   Grandin also spoke to the many uniquie talents for individuals wit autism, and that it is important to allow these talents to be contributed to society.  She spoke primarily of individuals with Aspergers syndrome, mainily the verbal folks.  She spoke of the importance of getting “these folks / kids” involved in social activities - music groups, drama groups – to encourage socialization with others while doing a pleasurable activity.   She noted the heterogeneity of autism, which reminded me that TAKING A SENSORY PROFILE IS SOOOO IMPORTANT!

For readers interested in Grandin’s perspective, I highly recommend Grandin’s Ted Talk http://www.ted.com/talks/temple_grandin_the_world_needs_all_kinds_of_minds.html

The second speaker to be introduced was pediatric neurologist Dr. Margaret Bauman.  Dr. Bauman is a leading researcher in the investigation of the neurobiology of autism.  In her talk Dr. Bauman spoke to the forthcoming DSM-V diagnostic criteria for autism changes (slated for May 2013).  These proposed changes will include Asperger’s as part of ASD and narrow the three criteria to two criteria (1. Communication and social limitations and 2. Restrictive and repetitive behaviors).  There has been a lot of two-sided discussion on these proposed changes on how it might impact the autistic community.  Bauman spoke to genetic phenotypes and subtypes  - the role of assessing subtypes, and the need to develop an assessment tool for such criteria to occur.  Because of the heterogeneity of the disorder, Bauman explained, “subtypes are important to consider.”

After a lovely lunch and a performance by the Boston Higashi School Jazz Band, the third speaker was announced.

The third speaker was Mr. Seth Mnookin, who presented a talk entitled “Panic Virus: A True Story of Medicine, Science and Fear.”  Mr. Mnookin is an author who has written a book on vaccines and autism called, The Panic Virus: The True Story Behind the Vaccine-Autism Controversy.   Mr. Mnookin, was very well spoken and well researched in his topic.  He had attended conferences, spoken to parents, and reviewed literature on the topic of autism and vaccines.   Mnooken noted in his talk that “biggest impact of the autism – vaccine debate has been how it has divided the autism community.”

The fourth and final speaker was Dr. Stephen Shore, who gave a talk entitled “Life on and Slightly to the Right of the Autism Spectrum.”  Like Grandin, Shore is also an adult person with ASD, and also considered high functioning.  Shore told stories of his experiences with perceptual processing, managing relationships, the role of his parents in his early treatment, and his current life.  He referenced such work as the Miller Method, Lovaas ABA therapy, Floortime (Greenspan), Daily Life Therapy (Higashi), and curriculum for Universal Design.   Shore in particular spoke about his experience with music.  Please see my previous post on Shore’s book http://musicalecholalia.blogspot.com/2012/07/beyond-wall-by-stephen-shore.html

Shore noted that “music is good for every body” and that “what is good for people with autism is good for everyone.”

All in all, the Higashi School hosted an incredible one-day event that surely stirred interest in students, educators, therapists, administrators, parents, and researchers alike.  It was a true gathering of pioneers in the field in a real master class like forum.

Beyond the Wall by Stephen Shore

In my opinion Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome (2003) by Dr. Stephen Shore is an incredibly informative read for professionals, parents, persons with autism, and the general community alike.  Shore is a professor of special education at Adelphi University and is an expert on the field of autism and music. 

In this autobiographical book, Shore shared his personal experiences as a person with autism spectrum disorder navigating through school, career, relationships, and the many adventures that life has to offer.  In particular interest to this blog, Shore discussed how music and imitation shaped much of his development and interests.  Shore commented that when he was a child his parents engaged him in "music, movement, imitation..." and this helped in his development of communication and socialization.

Shore has a bachelors and masters degree in music and a PhD in special education.  Shore originally had attempted to fulfill a PhD in music, yet ran into some complication in his understanding of some aspects in music therapy.   Music has always been important to Shore - in particular he discussed how music listening was able to "unlock" emotions.  When it comes to individuals with autism, music can be key to unlocking such emotions - at this juncture I recommend reading Allen, Hill, and Heaton's (2009) paper where the authors interviewed 12 high functioning adults and their subjective experiences when listening to music (see reference below).  Allen also has much emerging research on Alexythymia - which I will disseminate in future blogs.

In addition to Shore's personal experience with music, he is a skilled music teacher for children with ASD who are both verbal and non-verbal.  He described a teaching session, "parts of the session were spent in imitative drumming...I made certain that we took turns leading the imitation...this was a good activity to do when he [the child] seemed to be fading away and losing focus" (p. 69).  While Shore's goals in his music lessons were educationally based - his training and personal experience naturally inclines him to meet the child in the music - much like what occurs in music therapy.  In the following pages - Shore writes about the importance of narrating the child's word as they engaged in particular actions - and to speak in a musical tone.  For more information on intoned singing and autism, please read From music Making to Speaking, written by me and my colleagues (2010).

Shore speaks to the importance of imitation in understanding his world.  As an adult he explained how he learned social skills - such as smiling in response through imitation, and that one of his co-workers a previous employer used to engage in imitation with him - which was both fun and educational.  Shore noted that while not all persons with autism speak - and are considered non-verbal, music may provide a different outlet for communication.  In an interview with Dr. Rossen, at the end of his book Shore wrote, "music works better than words in communication for people on the autism spectrum because music lights up or accesses a different part of the brain than does oral communication"  As far as communication is concerned, I feel that for some people at the more severe end of the spectrum, music can be a way to communicate" (p. 188). 

When speaking of the term non-verbal (individuals who are non-verbal and have challenging behaviors are often considered more severe), Shore wrote that generally speaking "non-verbal communication includes tone of voice, facial expressions, and body language...however, the non-verbal component can be so difficult to decode that it interferes with getting the meaning from the verbal channel" (p. 143).  This thought if very interesting - and also an important topic to researchers - that is, how much language is understood, or do individuals with autism care for language --- at this point I recommend reading the work of French researcher Nadel.  I will write more about her later.  Infact, I will have to broach this entire topic more deeply in a later blog.  It is as vast and important topic!

At the end of the book, Shore expressed his political involvement in spreading the autism word -- educating others, and creating opportunities for individuals with ASD to receive appropriate education and services.  Shore who knows ASD first hand, and his autobiography will serve as an important handbook for parents, teachers, persons with autism and the general community to gain a better understanding of ASD.

In closing, I hope, just as Shore does, that people do find and read this book!  It is insightful, thought provoking, and educational.  Enjoy!

References

Allen, R. Hill, E. Heaton, P. (2009).  The subjective experience of music and autism spectrum disorder.  The neurosciences and music III: Disorders and plasticity.  Annals of the NY Academy of Arts and Sciences, 1169, 326-331.

Shore, S. (2003).  Beyond the wall: Personal experiences with autism and Asperger syndrome, 2nd Edition.  Shawnee Mission, KS: Autism and Asperger Publishing Company.

Wan, C., Demaine, K., Zipse, L., Norton, A., & Schlaug,G. (2010). From music making to speaking: Engaging the mirror neuron system in autism.  Brain Research Bulletin, 82, 161-168. 

Podcast from the WCOM Radio Show Interview

Here is the link to my interview with Dr. Sangeeta Swamy, MT-BC that occured on the Sound Effect hour with the WCOM Radio Station in North Carolina on June 18, 2012. Many thanks to Dr. Swamy for her excellent hosting and for creating such a wonderful forum to discuss "the art and science of music and healing" (Swamy, 2012). http://thesoundeffect.wordpress.com/2012/06/18/musical-echolalia-in-non-verbal-children-with-autism-an-interview-with-dr-krystal-demaine-2/

Film recommendation: Wretches and Jaberrers (2011)

A couple of months ago one of my students recommended that I watch the film Wretches and Jaberrers, "It is streaming on Netflix right now," she said, "you have to check it out!" I ended up watching the film that same evening and I really, really enjoyed it.

This film Wretches and Jaberrers is about two adult men who are diagnosed with autism and are non-verbal. These two men, Larry and Tracy are friends who travel the world with a mission to "change the public's thinking about intellectual abilities of people with autism" (Wurzburg & Geradine, 2011).   Each man is accompanied by a person with out autism and a film crew.

The film was actually directed by one of the same individuals who directed the film Autism is a World.   If you haven't seen Autism is a World then you should.

Wretches and Jaberrers not only shares the traveling story of Larry and Tracy, but also of thier personal lives, in addition to some of the history that surrounds autism.   Until the 1980's most adults with autism were institutionalized.  Larry and Tracy remind the viewer that people with autism "want to communicate" and that they are "more like non-autistic persons than not."   This eludes to the concept of using the arts as a language for autism.  For example Larry, an established artist, said "listen to my artistic voice not my autistic voice."  In another example when the men were in Japan they commented during a musical drumming experience that a person with autism will "use their body to hear the sound."

Though both Larry and Tracy are non-verbal they are able to communicate in spoken English language though typing - this skill exemplifies the intellectual ability and desire to communicate that is commonly stressed through out the film.  Through out the story the men travel to Sri Lanka, Japan, and Finland.    In one of the final statements of the film the men talk about the noted limitations in social abilities among individuals with autism and commented that, "poor social behavior is because of lack of social interaction."  We often hear the quote that people with autism are "in their own world". ..but if we give opportunities (alternative opportunities such as music making with others which allows for an inherent social engagement) then we can create more opportunities for developing that much needed social relationship.

This film fully supports many of the concerns I discuss in my research - that of the need for and understanding of 1. neurodiversity, 2. exploring alternative ways to socialize and communicate with people with autism, and 3. recognizing the intellectual abilities of all individuals. 

I hope that people will watch this film to gain an opportunity to widen their perspective on the life of the person with autism.

Radio Show June 18, 2012

Today, from 9:00-10:00am I will be on the radio program "The Sound Effect" hosted by Sangeeta Swamy. I will talk about my work with Musical Echolalia. Here is the Link to the live stream http://www.wcomfm.org/ I will post the link to the recording once it is ready.

Dissertation

On April 13, 2012 I passed the oral defense for my doctoral dissertation. My dissertation, "Musical Echolalia and Non-Verbal Children with Autism" has been published on ProQuest. The dissertation is available for purchase through ProQuest or can be accessed through the Lesley University library repository.