Minority Communities Have Lower and Later Autism Diagnoses
Research shows black and Latino children with autism spectrum disorder are often diagnosed much later in life than white children.
A later diagnosis leads to fewer opportunities for treatment and intervention for communities of color according to doctors from the University of Miami -- Nova Southeastern University Center for Autism and Related Disabilities.
Geremy Miles, an 8-year old black boy, was diagnosed with autism at age five, once he had already enrolled in kindergarten. Typically these diagnoses happen much earlier than the first year at school.
His mother, Shaniel Miles, and Dr. Jennifer Durocher, Director of Center for Autism and Related Disabilities at the University of Miami Nova-Southeastern, joined Sundial to talk about Geremy’s case, and the issue of under-diagnosis of autism among black communities.
Sundial did reach out to Fulford Elementary School in North Miami Beach, where Geremy Miles went to school, for comment about his experiences there. We are still awaiting their response.
WLRN: What does the data tell us about when minority kids are diagnosed compared to white children? Where is the difference coming from?
DUROCHER: It's really hard to say where and why that difference occurs. There are a number of potential reasons why that might occur. Families could be describing the symptoms in different ways, the symptoms could present in slightly different ways across ethnicity and race and then I think clinician bias plays a role as well.
I think clinicians assume that the disorder is more prevalant in white non-minority populations because that's where the prevalence rates are right now. But there's no evidence to suggest that's the way it should be.
We should expect to see similar numbers across different racial and ethnic groups and right now nationally it's still skewed. Hispanic and black African-American families are diagnosed later and they are diagnosed less frequently.
Did you find a good place or good program (after Geremy was diagnosed)?
MILES: This will be the longest interview if I had to tell you that process. After they diagnosed him, I went to the school. I gave them the papers. They were happy or whatever, but they still don't have the resources. So they said they had to do a test -- it was like a survey number of how you think your child is. The teachers had to do it. I had to do it. The counselor had to do it and a psychologist had to do it. After that, everything was stopped at a halt. It was getting to the end of the school year. I still didn't hear from the school. You know what I did when I left the school? I got in my car and I called the school board. I was on the phone with the director for this school for two hours explaining every step and measure of what I did. As I was talking to her, she was looking up his grades and she was like, 'oh my god' and we found out his teacher was out for two semesters because she was pregnant. So he had a substitute teacher that had no idea [what he was going through.]
So much of this been on you. Have you found any help with Dr. Durocher and with CARD? What have they able to do for you?
It's funny because I came to them for help and everything that they told me to do, I had already did it. So they had to just follow up with me. Everything I did myself. I did all of this. They [the school] kept wanting to fail him and hold him back with no explanation.
Dr. Durocher, it sounds like she had to do everything on her own. Is that what you're hearing from parents?
DUROCHER: That is an experience some parents have. With the school district this large, there's going to be breakdowns. The process is supposed to go in a very predictable way. Teachers are not experts in diagnosis and nor should they be, but teachers should have a good enough sense of what children in that age group generally do as far as their behavior and bring those concerns up so that the child can then be referred for evaluation. And it sounds like that happened in Geremy's case, but it sounds like it was perhaps delayed more than it should have been.
Once a child gets evaluated, there is supposed to be a meeting to determine whether the child is eligible for special education services and to develop a plan to do remediation and provide specific supports and accommodations and programming for that child to help close that gap. Again, that process may sometimes take longer than it should. Once that process happens, there are a range of educational programs that students are eligible for. The district has inclusion classrooms specifically for students with autism spectrum disorder but it just takes one time for it not to go right.