Robert Miller, Senses Cultural Family and Patient Advocacy Advisor and Moderator
Senses Cultural Family and Patient Advocacy Advisor, Robert Miller, moderated the workshop on Autism with a Middle Eastern Focus. Mr. Miller tied his experience with the organization and his travels to the Middle East on behalf of Senses Cultural to introduce the workshop and the four speakers. He offered a summary of the activities of Senses Cultural, including its work filling an important gap to make sure that families from a Middle Eastern background, whether they live in the region or in the US, have access to all the knowledge and services available to serve children with special needs including autism and other neurodevelopmental disorders or Down Syndrome, and innumerable other conditions. The State of California in specific mandates the delivery of many services in these areas, but many families are unaware of the services. Senses Cultural advocacy program entitled the Arts and Autism has shed light on these issues and the services available. The organization also gathers and distributes information and expertise collected from physicians and practitioners in the field of autism and neurodevelopmental disorders. It also advocates for early diagnosis and treatment which is crucial in addressing these conditions especially among Middle Eastern communities in which cultural or social barriers may delay or impede addressing challenges and successfully treating patients. Senses Cultural has led trips and convened autism workshops in the Middle East, including in Iran. The organization has taken behavioral specialists, speech and language specialists, occupational therapists, physicians, psychologists, genetic counselors and other therapists to Iran, both in Tehran and Esfahan. It has also convened two international conferences in Iran on autism, geared for the professional community and families, enabling meetings with many families to exchange views on state-of-the-art treatment and Middle Eastern perspectives on addressing evidence-based practice and research in the field. Senses Cultural has been very impressed by the experts that work in this field across the Middle East and specifically in Iran, which has enriched the organization’s activities, leading to a two-way street of equal exchange of expertise. In addition, the organization has held an Autism Training Workshop at the University of Shiraz, and led an informative event in collaboration with the UC Davis Mind Institute. The Institute has signed an MoU with Senses Cultural that establishes mutual collaboration to exchange academic faculty, students, knowledge, articles, and engage in cooperative scientific, educational and family events. Senses Cultural has worked hard to bring practitioners, professionals, and physicians from Iran to the United States, and to the Mind Institute, for a program managed by Senses Cultural entitled the International Training Program in Neurodevelopmental Disorders. The program, led by Robert Miller, allows Iranian experts to spend up to a year at UC Davis. Senses Cultural has organized other workshops for the Sacramento School District, and is now working with the Mind Institute to organize the International Stem Cell Conference to take place at the UC Davis Medical Center next year. Stem Cell research promises new areas of work and treatments in the field autism and neurodevelopmental disorders. Senses Cultural has played a critical role tapping into the tremendous work done in this field in Iran that has not been yet explored in the United States, and which is very promising for advancing science for the mutual benefit of all, enabling the organization to achieve its mission of bridging cultures and communities.
Summary of Panel 1
Speaker: Nastaran Milani
Migration-Related Trauma and Children’s Mental Well Bring
Nastaran Milani shared her latest research on migration-related traumas facing children suffering from autism and other neurodevelopmental disorders. Her case study focuses on the association between trauma and the mental wellbeing of children who migrated from Afghanistan to the United States. Traumatic events such as exposure to violence, threats, and temporary separation from family members have a lasting impact on these migrant children, unless the traumas are addressed effectively. Many of these children are exposed to pre-migration physical and emotional violence. These traumas impair the child’s ability to cope with traumatic experiences, and the child may feel emotionally or cognitively overwhelmed. Problems with adjusting to a new culture exacerbate the memory of the trauma and can lead to post-traumatic disorders, including emotional reactions, lack of concentration and depression. Older children display higher traumatic experience than younger children. Within the Afghan migrant community, it is the Afghan culture that often shapes children’s identities, which complicates assimilation. Afghan mothers are often reluctant to share family disorders with health care personnel, in order to avoid bringing shame to the household. Furthermore, within this community, research shows frequent exposure to violence and fear of separation. Refugee mothers’ traditional upbringing means that they have often lacked even primary education in their home countries. Though a second group of Afghan mothers shows more willingness to adapt to the new culture they too are reluctant to pay for their children’s health-related expenses that they find to be unaffordable. As a result, children experience more isolation and sleep problems, and are unwilling to make new friends. One successful treatment for these families has come through the UC Davis CAARE (Child and Adolescent Abuse Resource and Evaluation Diagnostic and Treatment Center), and parent-child interaction therapy designed to promote positive interactions. The use of these programs shows significant reduction in children’s trauma experiences.
Summary of Panel 2
Speaker: Jessica Tellez
Disability Rights Advocacy in California
Jessica Tellez discussed the value that her organization, the disability rights law firm Office of Clients’ Rights Advocacy (OCRA), brings to communities impacted by autism and neurological disorders, and other children with special needs. Her law firm is one of the largest law firms in California with twenty-one offices across the state that work with people with development disabilities and the provision of legal services. The firm provides technical services and evaluations to assist with hearing processes as well. The firm deals with abuse, discrimination, and employment law, and educates families facing disabilities to allow affected children to make decisions for themselves.
Summary of Panel 3
Speaker: Dr. Amir Ramezani
Middle Eastern Cultural Barriers
Dr. Amir Ramezani, an associate clinical professor/neuropsychologist, discussed the Middle Eastern cultural barriers that adversely impact early diagnosis and effective treatments of autism. The biggest barrier is the use of western frameworks to understand how Middle Eastern cultures respond to autism and neurological disorders. A test-driven approach common in the West faces challenges in the Middle East where patients perform differently as mostly the result of a language issue and not necessarily as a result of further serious impairments. Sometimes the barriers are not just around the tests and type of assessments, but the reality that Middle Easterners are minorities in the United States. Minorities are not able to get the type of treatment and assessment that they need due to lack of information and access, and the lack of medical literacy. Sometimes, Middle Easterners do not even know how to communicate the problem, which serves as a big barrier and causes them to be unseen in the medical world. Middle Easterners also tend to minimize their problems, often approaching treatments at a late stage. The challenge is therefore to encourage the Middle Eastern community to address the issue in a more open way, and address their concerns without fear of appearing weak or alone. Being able to really tackle some of the cultural beliefs is essential, without them feeling judged. Impact of immigration, trauma, emotional developments, or deep rooted issues with trust can also cause further complications in the treatment of autism in Middle Eastern families. Deep and intense love is common in Middle Eastern families and they have specific rich cultural rituals that actually help them talk about trauma in an appropriate way or through spirituality. So their cultural heritage should be used as a big asset in addressing and treating autism. But it is essential to help them build trust with care providers and experts through a lot of active listening and care for a person’s history that can include trauma symptoms causing neurological disorders as trauma can also lead to the re-experiencing of more trauma. But detecting symptoms of trauma are hard because they present in thoughts or emotions that may not always be openly discussed in families.
Summary of Panel 4
Speaker: Dr. Randi Hagerman
What are the Causes of Autism and Other Neurodevelopmental Disorders? What Research Is Telling Us
Dr. Randi Hagerman, a foremost expert on the Fragile X Syndrome, the most common known genetic cause of autism, discussed the latest research in her field. Autism Spectrum Disorders are defined behaviourally. These behavioural descriptors invite multiple different ideologies for autism. What is known is that about 40 percent of individuals with autism are positive at least in one test that points to Autism Spectrum Disorders. There are more than 400 mutated genes that can cause autism. As a result, genetic tests are critically important to treat autism in its early stages. But genetic and environmental problems combined can also increase the risk of autism. Children living closest to insecticides and pesticides in farmland have much higher rates of autism, and pollution such as smog and diesel fuels combined with maternal stress could possibly increase autism. Fetal alcoholism can also cause autism. Other forms of gene expression can cause autism, such as the age of the father, as older fathers will more likely have children with genetic mutation. Some prematurely born kids are more prone to developing autism, as are children born by C Section. As a result, detailed medical and family history records are required to treat autistic children. There are new treatments that can really help individuals with autism including targeted treatment. In the Middle East, some recessive conditions particularly marriage among relatives can be a trigger of autism, but new reproductive techniques give women a choice of avoiding the impact of a Fragile X syndrome on a fetus. There are also many new treatments being tested or used as a result of animal models. What cures the animal, and is safe for humans, can be used in human trials for the treatment of autism. The UC Davis Mind Institute has done a great deal of work on behavioural and language interventions, computer programs, and targeted treatments for Autism Spectrum Disorders.