On December 13, 2013 the Marcus Autism Center and the Atlanta Autism Consortium co-hosted a mini-symposium looking at the role of faith and religion in the lives and well-being of individuals living and working with Autism Spectrum Disorder (ASD). Organized by Marcus psychologist Dr. Samuel Fernandez-Carriba and Georgia State professor Dr. Anne-Pierre Goursaud the event, titled “Faith, Values and Autism,” included a panel of six individuals from a variety of faith perspectives and featured a presentation by Dr. Alfiee M. Breland-Noble on the development and implementation of faith based mental health promotion. This topic has important implications for neuroethics and neurodiversity, the perspective that autism and other neurological disorders are part of natural human neurological diversity that should be neither cured nor normalized.
The religious or faith-based perspective of a family impacts how the presence of autistic traits in a child is framed. Some religions, for example, may connect autistic difference to experiences in a past life, a state of being that is closer or further from God than non-autistic individuals, or a test from God. A non-religious caregiver or autistic individual may be more likely to accept and discuss biological or genetic causal models than those with strong religious doctrines. For example, during my dissertation research, for which I studied perceptions of autism in India, I learned that genetic causal models are more stigmatizing than explanations of evil eye or maternal pre-natal behavior because it is seen as more permanent and transmissible through the family’s ‘bad blood.’ Understanding a family’s or individual’s faith perspective can help professionals understand treatment decisions as well as develop more trusting doctor-patient relationships. Both of these benefits can greatly enhance the efficiency of autism-related interactions, from diagnosis to planning for transition into adulthood.
Some families find difficulties participating in religious communities because some traditions do not accommodate autistic children, who may find it difficult to follow religious restrictions related to diet, silence during services, and/or recitation of texts. However, as this panel demonstrated, religious communities can also be important sources of support and help spread a message of acceptance of families and individuals on the autism spectrum. This event drew professionals and autistic adults from around the community to discuss and ask: What role does religion and faith play in the lives of families with autism and the approach professionals take with families and autistic individuals?
|Dr. Samuel Fernandez-Carriba|
The event began with an introduction by Dr. Fernandez-Carriba. He explained that when psychologists research quality of life, they rarely include such items as values, goals, and dreams. These items, he explained, are personal (yet universal) and difficult to operationally define and measure using the scientific method, which is the accepted mode of research for the profession. Because of this, psychological research on quality of life usually focuses on items such as personal assessments of one’s physical and mental health; engagement in self-care, work, and leisure activities (which may include participation in religious institutions); sleep patterns; opinions about one’s looks, intelligence, happiness, and/or confidence; lifestyle features such as education and employment; and sex and relationship patterns. Therefore, research has been conducted on the effect of being religious and part of a religious community on health, but not so much on how religion and faith can frame the ways illness, disability, and normality are defined and (de)valued. Each person's religious (or non-religious) views on these concepts have a profound impact on their health and quality of life and should be included in our approach to health care to make it truly comprehensive, individualized and, thus, universal.
With disabilities like ASD, spirituality can lead to causal explanations, such as those described above, that diverge from what scientists or clinicians generally accept as likely causes (i.e., genetic or environmental factors). One study looked at Ultraorthodox Jewish communities in Israel families and found that caregivers understand their autistic children as having a direct line with God, a belief that was mentioned at this symposium by psychologist and follower of the Jewish faith, panelist Moshe Manheim. Professionals who do not respect this belief may alienate families, leading them to reject their advice or assistance. They may also fail to fully appreciate the difficulties families have in their communities and make false assumptions about a families priorities. For instance, the above study also described how these families struggle to find ways to gain community acceptance for their children, who may not be able to study scriptures or follow doctrines and rules of purity in the Ultraorthodox religion. Without a discussion about religious beliefs, professionals in this situation may not understand the importance for an autistic child to learn to, for instance, tolerate certain cleansing rituals.
The symposium included perspectives from the Hindu, Christian, Buddhist, Jewish, and secular perspectives. Each panelist presented unique and personal perspectives, including Dr. Meenakshi Lambha’s description of the Hindu belief in karma, which states that we are all working through particular deeds and debts from our previous and current lives. ASD is a part of karma and so is considered to be temporary (because it is just a part of the current life) and exactly what affected individuals and those around them can and should handle. Dr. Norma Harris described her experiences with the Buddhist faith perspective by explaining that we, and everything in our life, is permeable, that is constantly changing and impermanent. Extending this understanding to a label of autism means that this diagnosis is also fluid and should not cloud over the presence of a life. This particular belief is well aligned with the concept of neurodiversity. As the panel proceeded, it became clear that the overarching theme was that of community and acceptance. Each panelist described how their religious perspective worked towards creating a community in which an autistic individual and their family can find inclusion and acceptance.
|Reverend Jamie Butcher|
Incorporating a consideration of faith and religion into any work with ASD and related disabilities has vast benefits. When thinking about having neurodiverse practices, it is beneficial to include thinking about being mindful of diverse religious traditions and ways to strengthen relationships between professionals and families through a deeper understanding of priorities, goals, and causal models. Qualitative research should be done to help professionals more fully understand how faith impacts autism-related advancements such as early screening technologies and pre-natal diagnosis. These emerging technologies will be considered differently by families from different faiths who have varying perspectives on acceptance of difference, medical interventions, abortion, and the allocation of family time and resources. For my project at the Marcus Autism Center, which is focused on the neuroethical implications of using eye-tracking technologies for early autism screening and detection, gathering information about the role of faith in families could become an important recommendation for clinicians using this technology. Dr. Fernandez-Carriba summarized this approach by describing how he aims to ensure he asks families about their faith beliefs in his clinical practice by always asking: “What do you need?” This is a simple, effective way to ensure the family and child is central to all intervention, educational, and therapeutic efforts. It is also a reminder of everyone’s shared primary goal: improving the lives of autistic people and their families.
- My use of the term “autistic individuals” as opposed to the frequently used “individual with autism” is a reflection of preferences among autistic self-advocates who reject the use of people-first language. People-first language has been and still is used by disability advocates as a linguistic reminder that the disability is not as important as the person by placing a disability label last. However, the autistic self-advocates I have worked with and befriended assert the importance of their autism in their identity formation, and so prefer to have it listed first. They also reject the apparent need remind people that autistic people are, in fact, people through the use of people-first language. Because of their preferences, I rely on the use of ‘autistic people’ with the understanding that it is a sign of respect and solidarity.
- For example, see: Abler, J., Delhey, J., Wolfgang, K., & Nauenburg, R. (2004). Quality of Life in Europe: First European Quality of Life Survey, 2003. Luxembourg: Office for Official Publications of the European Communities; Hawthorne, G., Richardson, J., & Osborne, R. (1999). The Assessment of Quality of LIfe (AQoL) instrument: A psychometric measure of health-related quality of life. Qual Life Res., 8(3): 209-224; National Center for Chronic Disease Prevention and Health Promotion, Division of Population Health. (2011). “CDC HRQOL-14 ‘Healthy Days Measure.’” Centers for Disease Control and Prevention: Health Related Quality of Life (HRQOL). Retrieved from http://www.cdc.gov/hrqol/hrqol14_measure.htm.; World Health Organization. (2002). WHOQUOL-HIV Instrument. Geneva: World Health Organization. Retrieved from http://apps.who.int/iris/bitstream/10665/77774/1/WHO_MSD_MER_Rev.2012.01_eng.pdf.;
- Daley, TC. (2004). From symptom recognition to diagnosis: children with autism in urban India. Social Science & Medicine, 58: 1323-1335; Dhar, RL. (2009). Living with a developmentally disabled child: Attitude of family members in India. The Social Science Journal, 46: 738-755; Vaidya, S. (2009). A Sociological Study of Children with Autism in Delhi: Issues and Challenges. Paper presented at Asian Pacific Autism Conference, Sydney, August 21.
- Shaked, M. & Bilu, Y. (2006). Grappling with affliction: Autism in the Jewish Ultraorthodox community in Israel. Culture, Medicine, and Psychiatry, 30: 1-27.
- Breland-Noble, A.M. & Weller, B. (2012). Examining African American Adolescent Depression in a Community Sample: The Impact of Parent/Child Agreement. Journal of Child and Family Studies. 21(5), 869-876. doi: 10.1007/s10826-011-9547-z; Breland-Noble, A.M. (2012). Community and Treatment Engagement for Depressed African American Youth: The AAKOMA FLOA pilot. Journal of Clinical Psychology in Medical Settings, 19(1), 41-48; Breland-Noble, A.M., Burriss, A., Bell, C.C. & The AAKOMA Project Adult Advisory Board. (2011). “Mama just won’t accept this”: Adult Perspectives on Engaging Depressed African American Teens in Clinical Research and Treatment. Journal of Clinical Psychology in Medical Settings, 18(3): 225-234, DOI:10.1007/s10880-011-92356; Breland-Noble, A.M., Bell, C.C., Burriss, F.A., Poole, H.K. & AAKOMA Project Advisory Board. (2011). The Significance of Strategic Community Engagement in Recruiting African American Youth & Families for Clinical Research. Journal of Child and Family Studies, 21(2): 273-280, DOI:10.1007s10826-011-9472-1; Burriss, F.A., *Breland-Noble, A.M., Webster, J., & Soto, J. (2011). Juvenile Mental Health Courts for Adjudicated Youth: Role Implications for Child and Adolescent Psychiatric Mental Health Nurses. Journal of Child and Adolescent Psychiatric Nursing, 24(2): 114-121. *equal contribution; Breland-Noble, A. M., Burriss, A., & Poole, H. K. (2010). Engaging depressed African American adolescents in treatment: Lessons from The AAKOMA Project. Journal of Clinical Psychology, 66(8): 868-879.
Want to Cite This Post?
Sarrett, J. (2014). “Faith, Values and Autism” A Symposium Held by the Marcus Autism Center and the Atlanta Autism Consortium. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2014/02/faith-values-and-autism-symposium-held.html