By Maria Hodermarska, LCAT, RDT/BCT
*In this blog I will use the term “autistic people” rather than “people living with autism” to honor the efforts by some advocates in the autism community to regard autism as a culture, like deaf culture, not a pathology. The expression “person living with autism” implies a pathology secondary to the person while the term autistic person implies that the autism is fundamental and inextricable from personhood.
I am writing this post at a time when our public discourse in the US is deeply concerned with how we prove truth. Everyone seeking clinical treatment, especially those who inhabit more vulnerable identities and are oppressed more regularly, as a result, deserves to know that the kind of treatment that they are getting has some proof of efficacy. People living with disabilities, a particularly vulnerable subgroup of people who receive care, should know that there is evidence or proof, that the clinical processes they are engaged in, works.
Broadly speaking, quantitative researchers are aware of a phenomenon that occurs when, in duplicating a quantitative research study, it appears that the “truth wears off” (here). Qualitative research with its interviews, offers a depth and rich data about the phenomenon or experience studied but its findings are not easily generalizable across populations and experience.
Many autism studies examine the impact of clinical interventions on the “classic triad” of autism—impaired social interaction, impaired communication and restricted interests. These studies are problematic by definition because that classic diagnostic triad reflects an ableist bias that conflates difference with disability. Regarding autism as a disability (a limitation or impairment of functioning) as opposed to difference (a set of social and cultural norms that members of the group share) poses a set of problems challenges?, as does the fact that some autistic people may simultaneously experience life from different culture and face disabling conditions as a result of the difference. See an excellent discussion of this debate in The Lancet, (here).
Research that focuses on these triadic symptoms presupposes autism as a pathology rather than a way of being. As some autistic people ask us to consider autism as a culture--like deaf culture, as more of a difference than a disability--we can see how efforts to study how creative arts therapies can, for example, increase social interaction might be regarded as research structure premised in a disregard of personhood. In a community engaged research process with autism--where the community studied gets to determine what is studied--it is not clear that studies looking at “impaired social functioning” would be of interest to the group as much as, for example, training people who identify as neuro-typical in how to be more effective communicators and partners with autistic people.
“As some autistic people ask us to consider autism as a culture--like deaf culture, as more of a difference than a disability--we can see how efforts to study how creative arts therapies can, for example, increase social interaction might be regarded as research structure premised in a disregard of personhood.”
The issues that emerge in the critical appraisal of current research on the creative arts therapies and autism are involve the questions that present themselves in the appraisal of all research: the fidelity, validity and reliability of the studies.
A large international randomized control study by Christian Gold of the Grieg Academy Music Therapy Research Centre in Bergen, Norway, tested the efficacy of improvisational music therapy as an adjunctive treatment to enhanced standard care in the treatment of autism. The results found no reduction of autistic behaviors in the group who received music therapy.
Kenneth Aigen, Director of the Program in Music Therapy at NYU is quoted in a CNN article about the study (here). He points out, that the premise of the study itself, which is to decrease the evidence of autism in a person’s behavior, is fundamentally wrong-headed from the social-political perspective discussed above.
Aigen also brings into question the validity of the research. Does the research set out to do what it intends? Did the study’s author intend to prove that music therapy could “cure” autism by reducing symptoms that are perceived as adverse from an ableist perspective?
The study can also be challenged in terms of its reliability which is the degree to which the assessment tool used produces stable and consistent results. By using a variety of international practitioners who employ a wide variety of methodologies in their music therapy practice, the study cannot guarantee reliability. The same intervention protocol was not employed in every individual studied.
Additionally, the fidelity of the intervention in the study can be challenged. Without a single plan for how the music therapy intervention would proceed, the study couldn’t insure an integrity across practitioners for whom the very definition of music therapy improvisation and the interventions used to achieve that would not be consistent.
At this year’s British Association of Drama Therapy gathering in Chester, England, a team of researchers presented on the progressing developing research in a two-year feasibility study on the use of drama therapy to decrease anxiety in children diagnosed with autism. As a feasibility study, this is not the actual research but preparatory research that will indicate the practicability of such a study. The description of the study called Shine a Light on Autism reads:
“…a two year feasibility study in Dramatherapy for children with Autism focusing on whether attending a Dramatherapy intervention of 20 sessions can help reduce anxiety.” It is hoped the study will lead to a successful funding bid for a full randomised control trial (RCT) across a large number of schools. The development and preparatory work for the feasibility study started in January 2018. “(Description of the papers presented at the annual conference of the British Association of Dramatherapists, www.badth.org)."
Already it is clear that this feasibility study is not concerned with a reduction of symptoms or behaviors considered part of the “classic triad” of autism. Rather, the study is concerned with how drama therapy can reduce anxiety, generally a desirable outcome for anyone.
A recent randomized control study at Vanderbilt University, Corbett et al (2016),[1] was concerned with how theater interventions could support the development of social competence in autistic children. The study looked at participant’s cortisol levels (a body hormone that helps the body respond to stress) to measure impact of the interventions.
“Research is crucial in establishing evidence-based practice that demonstrates the possibilities of creative arts therapies for autistic people.”
Findings from another study of parents, teachers and caregivers in the UK, Godfrey & Haythorne, (2013)[2] also looked at anxiety. This study used an Interpretive Phenomenological Analysis to assess the effectiveness of a drama therapy program in schools serving children living with a diagnosis of ASD. The results, according to the researchers, were overwhelmingly positive. They report that the structures and affective play of drama therapy improved social skills and reduced anxiety for the participants.
Research is crucial in establishing evidence-based practice that demonstrates the possibilities of creative arts therapies for autistic people. The challenges, however, remain with regard to how autism is regarded as more disability than difference. We need to consider how that ableist world view influences not only what is studied but also what the treatment interventions used are intended to increase or decrease as a result.
My personal goal for the future is for the research itself to come directly out of the needs and wants of the community being studied. In doing so, we all get to step away from pathologizing each other and move closer to understanding ourselves and each other in our infinite and idiosyncratic multiplicities.
[1] Corbett BA, Key AP, Qualls L, Fecteau S, Newsom C, Coke C, Yoder P (2016). Improvement in Social Competence Using a Randomized Trial of a Theatre Intervention for Children with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders , Feb;46(2):658-72.
Godfrey, E. & Haythorne, D. (2013). Benefits of dramatherapy for Autism Spectrum Disorder: a qualitative analysis of feedback from parents and teachers of clients attending Roundabout dramatherapy sessions in schools. Dramatherapy. 35. 20-28.
About the Author:
Maria Hodermarska, MA, RDT/BCT, LCAT is an Assistant Clinical Professor of Drama Therapy at New York University. She is a Licensed Creative Arts Therapist (LCAT), a Registered Drama Therapist (RDT) and Board Certified Trainer of Drama Therapy (BCT), a Credentialed Alcoholism and Substance Abuse Counselor (CASAC), and an Internationally Certified Alcohol and Drug Abuse Counselor (ICADAC). Her work spans both the creative and applied psychological uses of the theater arts, most often within NGOs, community-based mental health programs and alcohol/substance abuse treatment programs serving un-served or under-served populations.
Ms. Hodermarska is the coordinator of creative arts therapies for Project Common Bond, an international symposium for young people who have lost a family member to an act of terror, armed or inter-religious conflict. She is former Ethics Chair and current Ethics Committee member for the National Association for Drama Therapy and is a former Education Chairperson for the same organization.
