On Feb. 26 Dr. David Mandell, the Kenneth E. Appel Professor of Psychiatry at the University of Pennsylvania Perelman School of Medicine, delivered the third annual Kessler-Freedeim Lecture.
The event was sponsored by the Schubert Center for Child Studies and co-sponsored by the International Center for Autism Research and Education.
Speaking before a large crowd of medical professionals, students and professors, Mandell discussed disparities in the diagnosis and care of children with Autism Spectrum Disorder (ASD).
Mandell defined disparities as “racial or ethnic differences in the quality of healthcare that are not due to access-related factors or clinical needs, preferences and appropriateness of intervention.”
There are three main disparities between ethnic and racial groups: the diagnosis of autism, access to treatment for autism and the quality of the treatment.
In the diagnosis of autism, he outlined the inconsistencies in the identification of ASD and how that can prevent a diagnosis. He reported that across three Education Attainment levels of the mother, low (some high school), medium (high school and possibly college) and high (college degree and beyond), there was a correlation between low levels of symptom reporting and mothers in the low education group.
Mandell discussed why studies that compare ethnic groups with the age at which a child is diagnosed are problematic; they do not take into account those who are not diagnosed, thus completely ignoring the issue of low reporting and its effects on the diagnosis rate.
Another disparity comes in the form of perceived health care needs. Unlike other disparities outlined in the presentation, inequalities in perceived health care needs were relatively similar. However, when looking at the delivery of these services and medication there is a divergence. Data from the National Survey of Children’s Health shows that African-Americans and Hispanics had more problems receiving phone advice and far more problems receiving acute care.
The last of the disparities outlined was how parents of children with ASD endorsed the symptoms. Where African-American and white parents were far more likely to endorse speech symptoms at the same rate, African-American parents were far less likely to endorse social and Restrictive and Repetitive Behavior (RRB). This can be a large contributor to whether families get an ASD diagnosis or an Intellectual Disability diagnosis because speech symptoms may be the same for the two disorders, but they are differentiated by social and RRB symptoms.
After his talk, Mandell was joined by Melissa Armstrong-Brine of MetroHealth, Ph.D., Nicole Crews of Milestones Autism Research and Angela Ciccia, Ph.D., Psychological and Communication Sciences Department at CWRU. The panel took turns responding to Mandell’s talk, then took questions from the audience.
Cruz outlined systemic changes to the way that first responders are trained to deal with those diagnosed with ASD, increases in workshops and training for parents in safe settings and vastly increasing the access that parents have to educational and medical services.
Mandell outlined ways that CWRU students can help reduce these disparities. He suggested that student organizations could partner with Milestones, Cruz’s organization in Cleveland working to reduce these disparities every day through education and workshops.
Armstrong-Brine spoke about integrating autism education directly into college campus orientations. After considering the lack of a requirement on reading a common reading book and learning about CWRU Diversity 360 training, she suggested the implementation of a Neurodiversity 360 program.