Category Archives: music and dance

Susan Boyle and Asperger Syndrome

Susan-Boyle-at-home-008

In today’s Observer Magazine there is an article about Susan Boyle in which she reveals her recent diagnosis with Asperger Syndrome. She found fame and fortune 4 years ago on the talent show, “Britain’s Got Talent.” Now age 52, she is a best selling recording artist and a multi-millionaire. So why does she need a diagnosis? Susan’s answer is instructive, and a valuable lesson for all who question why we would ever seek to label our child or ourselves.

“Asperger’s doesn’t define me. It’s a condition that I have to live with and work through, but I feel more relaxed about myself. People will have a greater understanding of who I am and why I do the things I do.”

Without the diagnosis other people wrongly labelled her. At school she was “Simple Susan”. News stories have speculated about her supposed learning difficulties or alleged brain damage. <sarcasm> Clearly there has to be a reason why a plain thinking, plain looking, middle aged women can sing with the voice of an angel. </sarcasm> I only hope that the media circus does not now use Asperger Syndrome as an excuse to dismiss Susan Boyle, the person and describe her singing ability as a “special talent” or “savant skill” that belongs to autism and not to her.

If truth be told, I am not a fan of Susan Boyle, the singer. But after reading this article I am definitely a fan of Susan Boyle, the person. I agree with the author that she is warm, kind, empathic and intelligent. She has battled with prejudice. She has coped with personal tragedy and depression. She admits to feeling some anger after her struggles to overcome ageism, sexism and disableism in order to be recognized, not just as a talented singer but, more importantly, as the thoroughly decent and worthwhile person she is.

Creating a Co-Mmotion

Another of my projects last year was a collaboration with Co-Mmotion. This has grown out of “Your Move,” an initiative of Barrow Borough Sports council to provide dance workshops for children with disabilities during school holidays. The providers were Alan Fitzgerald and Tids Pickard, aka Fitz and Tids, a gifted musician and dancer who have track record in working with pupils and staff in Cumbria’s special education sector.

George Hastwell School, where I work has long enjoyed a fruitful partnership with Fitz. We began humbly enough with drumming workshops and progressed over the years to the creation of an opera performed to a
local audience on the stage of Barrow Sixth Form College. Fitz has also assisted with a collaborative effort involving a number of schools that used music and dance to tell the story of the Slave Trade and was performed in Kendal.

With Co-Mmotion they are less concerned with enabling young people to create and perform finished pieces, although this is not ruled out. Instead they provide workshops for autistic children to participate in music and dance with the opportunity for personal creativity and collaboration. These also run in the school holidays and have been funded by Northern Rock and supported by the local branch of the National Autistic Society.

Northern Rock have also funded a pilot study at George Hastwell School to test whether music and dance brings lasting benefits apart from the obvious enjoyment displayed by those who have taken part in Co-Mmotion activities. Now I need to write up a proposal that will attract researchers and funders for a follow up project. Any advice from the Autism community will be most welcome. Here is my initial report.

Introduction
Autism is currently diagnosed on the basis of observable behaviours that are taken as evidence for a triad of impairments in
1. Social understanding
2. Social uses of language
3. Social uses of imagination
The key word here is “social.” Intellectual understanding may be normal or even outstanding. Some autistic people do have additional cognitive impairments. Others like Temple Grandin have PhDs. The reasons for what one expert described as a “fundamental impairment of social cognition” are still under investigation. Are there basic psychological drives that are impaired? Are there complex genetic markers for different aspects of the triad that need to come together for a full expression of the syndrome. Are they present in partial form in parents and siblings who display a broader autistic phenotype, sometimes referred to as “shadow syndrome,” in which some or all of the features of the triad may be present but do not cause significant impairment?
Some autistic people have argued persuasively from the standpoint of neurodiversity that they are not impaired at all but have a neurological difference that need not necessarily be disabling if society were to show sufficient understanding and make adjustments to accommodate their needs. These ideas have been taken up by academics such as Morton Gernsbacher who examined research papers in which autistic strengths were either ignored or taken as evidence of impairment. Mottron, Dawson et al. examined cognitive performance and found that autistic people who performed badly on traditional tests of cognitive functioning performed better using scales that placed less reliance on verbal ability.
It is commonly accepted that functional outcomes for autistic people (like independent living, job prospects etc.) are positively related to cognitive functioning and verbal ability. This has led to a distinction between high functioning and low functioning autism. Amanda Baggs is one autistic person who confounds this distinction. She finds verbal communication difficult but writes and speaks via computer technology. She requires high levels of personal care but has made a video about her life which was so successful on YouTube that it led to an invitation to collaborate with researchers at MIT.
This lack of clarity about the true nature of autism and its underlying causes has led to a plethora of interventions, therapies and cures. Even those that are widely used and generally thought to be effective have very little research evidence. The most successful like Early Intensive Behavioural Intervention do have an evidence base because they specify targets that are easy to measure – more eye contact, less self injurious behaviour etc. But the qualitative claims for interventions like play therapy and music therapy are much harder to establish.

 

The Project

It is against this background that the Co-Mmotion project is trying to secure an evidence base for its work with autistic children. The idea is that the language difficulties that have been documented in autism may significantly affect social interaction in a way that parallels Mottron and Dawson’s findings about the impact that verbal demands can have on cognitive performance. If verbal language ability is subordinated to other modes of communication such as music, movement and dance will autistic children show greater levels of social skills and empathy in therapy sessions? And, the key question for any intervention, will those skills cross over from the therapy sessions and be used in everyday life?
To see whether such a project is feasible Co-Mmotion has been working with a group of children at George Hastwell School. The pupils, aged between 11 and 14, all have severe learning difficulties. One, the only girl in the group, is non-verbal and severely autistic. There are six boys with an autism diagnosis, two more who are borderline and one with ADHD.
The initial sessions were held in school. Fitz played music while Tids moved around the space. Staff observed to see which pupils engaged in activities. Where they attracted to the instruments or to the movement? Would they observe, copy or respond in other ways. Would they initiate things for themselves?
We experimented with groupings. If we started with those pupils who were least active in the group and persuaded them to participate with Fitz and Tids what would happen when the rest of the group came to join in? If somebody responded well on their own but reacted badly when the group joined we offered them personal time at the end as an incentive to stay with us during the group activities.
Equipment was used to facilitate movement in space, adding up and down, under and over, in and out etc. Pupils were encouraged to move equipment around to create the space.
While a few pupils were able to respond spontaneously and achieve very high levels of interaction with Fitz and Tids, most pupils benefited from added structure – coming together to talk and create games and then apply the rules wordlessly using music and movement.
Activities included follow the leader, mirroring, not touching the ground, finding places to hide, freezing into statues, leading and being led by a partner. Changes in the music or the music stopping acted as a cue. Sometimes pupils controlled the music, sometimes they worked with Fitz. Eye contact, facial expression, gesture and touch were needed to negotiate paired activities and to resolve potential conflicts such as two people moving towards the same space or meeting on a balance beam. Who should give way? Sometimes everybody was invited into a collaborative effort to build a living sculpture or work as a team to cross the hall using a set of rules.
Assessment
We began with an elaborate checklist which was soon abandoned. The problem was that it called for observers to make a series of judgements about the quality of the interaction while trying to quantify them at the same time.
Then we used a simple measure of engagement. Each level was ticked whenever we saw evidence in a session.
1. Present
2. Observing
3. Participating
4. Copying
5. Responding
6. Initiating
This worked well enough to record changes over sessions, eg recording that a pupil was always present by the final session and usually observed the others. It did not capture the dynamics of individual sessions to show how a pupil moved up and down between the six levels over time or which activities were most successful.
To get round this we also used video to record parts of sessions. This sometimes missed important interactions that were happening off camera so we also used a diary to record significant events. This combination of charts, videos and a contemporaneous record did capture the sessions but was very labour intensive.
Second Sessions
We were interested in taking pupils to a neutral space and comparing responses. Sessions at the Forum were marked by a greater initial structure. Fitz and Tids set the agenda and guided pupils through the activities. However whenever pupils took ownership of a game or activity Fitz and Tids stepped back and responded to the pupils’ initiatives. It was also noticeable that pupils formed coherent teams that developed mutual understanding which carried over from one session to another, providing continuity and a common background from which some pupils were able to initiate and develop new forms of interaction.
Conclusion
My intuition is that the project has been beneficial to all involved and should continue. Our greatest challenge has not been to involve the pupils in non-verbal social interaction but to capture that involvement both qualitatively and quantitatively and to provide a data set that can inform future projects.

I suggest

  •  The involvement of academic researchers who can
  • Assist with a literature survey to provide a more rigorous theoretical basis for the work.
  • Provide more rigorous methods of quantifying progress and performing statistical analysis of the data.
  • Train observers in the methods of collecting data.
  •  Professional video of sessions that can be analysed to add to the data sets.
  • A smaller group of pupils with an ASD diagnosis and no confounding factors like ADHD.
  • Agreed aims that are measurable against baseline assessment of pupils.
  • A neutral space like the Forum where environmental variables can be controlled.
  • A commitment to maintaining the positive qualities of the work where all the pupils are happy to be involved and the intangible benefits they enjoy are not compromised by the requirement to follow the programme.
  • Mike Stanton
    George Hastwell School
    24 May 2012