In this clip, Ebony Holliday, PhD, assistant director of Community Programs at Kennedy Krieger Institute’s Center for Autism Services, Science and Innovation (CASSI), talks about how cultural differences can sometimes impact the rates that families, especially families of color, seek services, interventions, and even diagnoses of autism spectrum disorder (ASD) for their children.
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Transcript
There can be cultural differences that impact the rates at which families and specifically families of color may seek services or seek intervention or even a diagnosis. So for some cultures there may be a stigma. And so those are things that we have to acknowledge. There might be a stigma related to disability, there might be a stigma related to autism, and that sometimes comes from the added burden of how is society going to treat my child? Or how is society going to treat me if I now have this disability or this other difference, or this neurodivergence that might be present. So sometimes that comes from fear, that stigma that’s there as what does this mean for my child? What does this mean for myself? Especially for families of color who may already feel marginalized and may already be marginalized. Now we’re adding something else onto that.
So there’s really that sense of maybe let’s just wait and see. Maybe it’s not what we think. And so sometimes we have that likelihood of maybe delaying those things. And that can be because of stigma. Another factor might be distrust. And so distrust of the medical system. And so that’s something that is present and that’s something that is a legitimate concern for many communities. And that is because of a history and a difficult history that’s occurred in medical systems, especially with research. So there are various studies that have been done in the past and at times with populations of color and ethics may not have been where they should have been with that. And so although we are not doing that any longer in research, and there are many protocols and procedures that are in place now, those previous and what has happened in history is still present.
It’s still there. Still. And so sometimes there is that distrust that is current with medical systems, and there are reasons even beyond research. So it may just be previous interactions or it may be things like just feeling skeptical. Is this person going to be able to understand my background? Am I going to be able to connect with this provider so that distrust at times can be there? That stigma can be there and they really interplay at times and they might work together to the sense where families or individuals may be more hesitant to seek services, seek screening, seek intervention.