Diversity Fellow Project, Louma Sebaihi
Reducing Disability Stigma in the Arab-American Population by Introducing the "Learn the Signs. Act Early" Campaign
Disability is taboo in the Arab-American population. Many have difficulty seeking help and accepting the final diagnosis because of stigma. Early diagnosis and intervention is critical for best outcomes so it is essential to address stigma and help parents act early. This presentation will review our efforts to introduce the world of disability to this population using the "Learn the Signs. Act Early" campaign.
Project Narrative
1. Please describe your activities during your fellowship experience. Describe your final capstone project(s).
My focus area during the Diversity Fellowship was autism. As a future Family Nurse Practitioner, I will be encountering many children with disabilities. It peaked my interest because of its common silent prevalence; 1 in 68 children have autism yet, many cases go undiagnosed and children get labeled as troubled and defiant.
The majority of research in the field of autism has been conducted in Western countries with readily available resources. In the developing countries and specifically in the Arab world, the field of child psychiatry is relatively new. Autism was not the subject of interest in the region until the late 1990s. Lack of awareness, culture, and resources contribute to the unmet needs of autism patients in the region.
2. Who did your project inform, help, influence or impact? (UCEDD, individual, community, state) How?
There is a tremendous need to raise the awareness of policy makers towards the need for implementation of services and research plans aiming to bridge the gap between needs and services. As a Syrian American that has lived around the world, I am familiar with many cultures and their perception of disabilities. There is a stigma that is associated with any label, and there are not a lot of families seeking help because of the social anxiety that accompanies the diagnosis label. I felt the need to initiate change in my community, and break the stigma and educate the community in Morgantown about what autism is, and how early treatment can improve the outcome of the child. It is common in many cultures to ignore the warning signs and just hope that if the child is raised as typically as possible, the signs of autism will disappear.
3. Why did you choose to work on that project(s)?
My project was to raise awareness of disabilities and break the social stigma in the Morgantown community. I decided to host a presentation at a familiar place for a lot of people in the community, the local Mosque. The presentation included explaining different types of disabilities, introducing people first language, learning the signs of autism, and the importance of acting early to any red flags. The Islamic Center of Morgantown, or ICM, is a melting pot of over 20 different cultures and ethnicities. I held Arabic and English sessions on 2 different days and got a positive response from the community. The average participant age was 38 years old, with the youngest being 14 years old and the oldest 72 years old; 55% of participants were Syrian, 15% Pakistani, and the rest were a mix of Libyan, Jordanian, Egyptian, Hispanic, and European Americans. Of those who participated and completed an evaluation, 98% reported increased confidence on where to go for help, and 92% strongly agree that the presentation was helpful in increasing their knowledge about Autism. There was a drastic improvement in knowledge after the presentations, with 70% improvement from the pre-presentation test.
One of the limitations is that 90 percent of the participants were female. I was hoping to get more male participants at the event that was occurring after the weekly Friday prayer, where most men of the community attend. There were females already in the room waiting for the lecture to start. Many males walked in and decided not to attend after realizing that they are the only males. I did not take into account the respect that the Muslim religion had for women, and that most men would feel that they were intruding if they were the only males attending. If I were holding this again, I would personally contact 3-4 males and be sure of their attendance, that way more males would be encouraged to join them.
4. What did you gain from being a Diversity Fellow?
During my fellowship at the University Center for Excellence in Developmental Disabilities (UCEDD), I grew in knowledge and experience. My first volunteer placement was directly related to autism. I was a therapist providing applied behavioral analysis (ABA) to children with autism at the UCEDD. The direct interaction with the children gave me a clear picture of their capability and skills. Some of the programs I worked with were reading, math, writing, and independent work. I had a firsthand encounter on different sides of the autism spectrum, and how applied behavioral analysis improved their behaviors and helped them learn. It was not simply the bookwork that helped the children succeed, it is the collaboration of all the therapists interacting with the child with the same goals; encouraging the child to ‘mand’ or ask for what they wanted, and consistent positive reinforcement when they did. I was delighted to see the children grow during my stay as their therapist this summer.
I also volunteered at Sundale nursing home. I got to know the residents and their disabilities, which mostly came with their old age. I assessed their needs for tools and resources that the West Virginia Assistive Technology Systems (WVATS) offered. The residents were at different stages in their adjustment to the nursing home. Some were completely upset and did not want to participate in any activities, and others were accepting the fact that they were at the nursing home and that it was what was best for them. I learned how it was very difficult being reliant on others for simple daily living tasks, and it is a challenge that a lot of people with disabilities face every day. I learned that it is important to show enthusiasm when assisting someone with a disability, because assisting them with no expression on your face may be mistaken for you feeling burdened, which can be a patients’ fear.
5. How will this experience impact your education or career decisions?
My experience at the UCEDD was very eye opening. I came in with little idea of what autism is and concluded the fellowship owning the subject as my own expertise. I saw concerned families come to the next steps clinic and leave with a diagnosis for their son that explained his atypical behaviors. I observed different reactions from families that ranged from expecting the diagnosis, to shock and denial. I attended online modules that reinforced what I had witnessed at the next steps clinic. I also experienced the medical side of the diagnosis during on-site experiences at the Kleinberg center.
A family nurse practitioner plays a huge role in assisting the family with autism. Although signs of autism spectrum disorders are evident during the first year of life, few children are diagnosed prior to 3 years. Primary health care professionals play a role in the early identification of autism by keeping in mind the developmental milestones of a typically developing child and being very familiar with red flags for autism. Screening at well-child visits from infancy is of utmost importance to nurse practitioners. With early diagnosis, timely intervention is possible, which is proven to show improvement in outcomes (Schnur, 2005).
6. What are your future goals? Where do you see yourself 5 years from now?
My plans for the future is to arrange informational seminars at my workplace for health care professionals, nurse practitioners, and pediatricians to raise their awareness about autism. I will also continue reaching out to the Arab community with advice and direction. I will be working on translating materials to the Arabic language to educate the Arab population. Arabic resources are very limited, and I plan to make videos in Arabic about autism to reach out to an even larger audience, including those who prefer not to read lengthy material.
7. What recommendations do you have for other fellows?
In conclusion, the Diversity and Disability Fellowship has given me confidence in interacting with the disability community. I feel as though I now own the subject of disabilities, and feel the need to expand on what I learned and educate those who do not know. I came into this fellowship not knowing much about disabilities but left with a lifelong conviction to serve those that are underrepresented and misunderstood.