Disparities in the Diagnosis and Care of Autism

Are there disparities in the identification of autism among children? This was the guiding question for the Schubert Center’s recent Kessler-Freedheim lecture. Dr. David Mandell’s talk, “Disparities in the Diagnosis and Care of Children with Autism,” highlighted the disparities that exist, what potentially causes them, and some promising steps for improving them.

Mandell began by reviewing data that shows that disparities in autism do exist. The presentation and prevalence of autism is similar across racial and ethnic groups, so we should not see differences in prevalence rates, but we continue to see disparities among black and Latino children. Latino and black children are less likely to be diagnosed with autism spectrum disorders than white children, are more likely to be misdiagnosed, and on average are diagnosed at an older age than white children. Three things that seem to be contributing to growing disparities include race, education, and socioeconomic status (SES). When looking at mother’s educational attainment, prevalence of autism was always lowest among mother’s with a low educational attainment (less than a high school diploma). Black and Latino families also had issues getting the care they needed for their children. Relative to white families Latino families had more problems getting acute care, specialty care, and did not use prescription medications. Black families were 3.3x more likely than white families to say it was much more difficult to get services for their children after they graduated high school.

What causes these disparities? Mandell briefly spoke about the various factors that can contribute to these disparities. There are patient factors such as stigma and a lack of education and resources that can affect a child getting a diagnosis and access to the proper services. Providers can also contribute by having biases about groups or a lack of knowledge about existing disparities. There are also systemic factors such as poor clinical encounters and poor health services that can contribute to the disparities.

Mandell’s key message when talking about how to reduce these disparities was that we need to partner with communities in order to raise the quality of services they receive. There are some quick fixes such as patient navigators and physician education programs that can help, but systemic change is necessary to make a real difference. Mandell wants to see health systems partnering with communities to improve the care they are providing and to address the specific needs of each community.

Joining Mandell were three community respondents. Dr. Melissa Armstrong-Brine is the Director of MetroHealth Autism Assessment Center, and she discussed her experiences being a clinician specializing in autism. Nicole Crews, Chair of the Milestones Autism Resources Diversity Taskforce and Board of Directors, talked about the work Milestones does to provide resources to our local community and she also shared her personal experiences of being the mother to twin boys with autism. Dr. Angela Ciccia is an associate professor of psychological sciences at CWRU. She talked about her own research using telehealth to improve diagnoses rates of disorders such as autism. The respondents’ experiences helped to foster a discussion with the audience about what we can do to provide support to Cleveland’s children with autism.

Schubert Center Research Adviser on Diversity in Children’s Literature, Cara Byrne, curated a list of picture books with representations of children with autism. Download this list here.

Download the snapshot publication here.

Download a copy of Dr. Mandel’s slides here.

The Kessler-Freedheim lecture is in honor of Dr. Jane Kessler, Professor of Psychology and former Director of the Mental Development Center, and Dr. Donald Freedheim, Emeritus Professor of Psychology and former Director of the Schubert Center.