Earlier this week, the Charleston (WV, US) Daily Mail carried a story entitled “Black children with autism diagnosed later” that reported about the problem of false negative identifications by ethnicity. The story recounts the case of a boy named Ronnie who went through a string of other diagnoses before being identified as having autism.
Why wasn’t he diagnosed sooner?
That’s a question that might be asked about many black children with autism, who, according to one study of children on Medicaid, are diagnosed on average about 18 months later than white children.
While a year-and-a-half may not seem like a long time, it is in the life of a child with this developmental disorder, which affects brain function and impedes social interaction and communication skills.
The story goes on to explore perspectives on this issue, quoting representatives from different organizations with interest in it. But, don’t think it’s limited to autism. Consider Charmayne Maddox’s paper, “Race Matters: Disparities in African-American Children with Attention Deficit Hyperactivity Disorder,” which examined the literature on ethnicity and ADHD.
After controlling for possible mediating and/or moderating variables (e.g. socioeconomic status, maternal education, health insurance status), researchers, as noted earlier, have found health disparities in ADHD for African American children, as African American children have not received adequate treatment.
Given that poverty increases risk for disability and that ethnic minority families are disproportionally like to be affected by poverty, there should be a concerted effort to ensure that parents and families get information about disabilities and have every reasonable chance to have children assessed. The basic point is that ethnicity should not affect whether students get the help that they need.
Links:
- “Black children with autism diagnosed later“
- Download a copy of Ms. Maddox’s paper
- Padres Abriendo Puertas (a Connecticut organization promoting access to education and mental health services for Latino children and youths.
- The African Caribbean American Parents of Children with Disabilities does not appear to have a Web site, but people can locate information about it via Google.
- National Association for the Education of African American Children with Learning Disabilities (NAEAACLD) and “One Child at a Time: A Parent Handbook and Resource Directory for African American Families with Children Who Learn Differently” by the NAEAACLD and published by Schwab Learning.
- The National Coalition for African American Parent Involvement In Education has a Web site, but it was displaying 404s when I went to it.
- Family Education’s resources on special education and African-American children.
- US Department of Education Office of Special Education Programs links to parent resources.
I honestly have been thinking that I would write my dissertation on the effects of how a medical dx effects an IEP team. I absolutely feel that minorities do get dx’s later because many of my students lack medical insurance. Wealthy families tend to have all the testing done where I work. Then there is the fear to label minorities who have been in the past labeled wrongly (i.e., Hobson v. Hanssen and Larry P. v. Riles).
As a teacher of 8th grade math students as well as a mother to a son that is autistic, I have been fortunate to have access to medical care as well as the inside-scoop about getting early intervention services for my son. Since teaching middle school, I have suspected two of my minority students with autism and did go to Child Study. Luckily the parents were supportive of this process but these students should not have had to wait until someone like me to come along. Schools really need to educate their teachers for the early signs. I constantly am educating my administrators and fellow teachers about autism; so many have misconnections about what autism is. I feel very strongly that these students could be much more ahead than when I got them.
I also feel that some of these minorities students are getting labeled MR over autism because it is out in the community that autism is a white disorder. I am absolutely amazed when I hear miniorities say they did think autism could effect them.
I, too, have witnessed 2 black students in the last year who went undiagnosed until later (both at 5). I think we’d be remiss if we fail to realize the impact of cultural factors. One mother thought her little girl was quiet, another mother thought her boy was just rambunctious (”Boys will be boys”). Furthermore, the distrust of institutions for some of our parents in minority communities leads to an opposition to testing and “labeling” (diagnosing). To close, the mother of the boy also took him to church and eventually, a faith healing service to try and cure him… even though she swore we (the school system) were trying to label him and nothing was wrong with him.