African-American Children with Autism May Not Get Needed Early Intervention
New research from the Centers for Disease Control and Prevention suggests that the rate of newly diagnosed children with autism in the United States continues to skyrocket. About one in 50 school children have the condition, per statistics released last month. However, some children, especially African-American children and families in other minority groups are still being diagnosed later which can interfere with successful treatment.
Autism is a group of developmental brain disorders with symptoms varying from one child to the next. Children typically have difficulties in three areas: social impairment, communication difficulties, and stereotyped behaviors or restricted interest.
Children of African American, Hispanic, and Asian decent are more likely to be identified later than their white peers. In fact, back in 2002, Dr. Jennifer A. Pinto-Martin PhD MPH and colleagues demonstrated that African American children receive an autism diagnosis almost two years later than white children, resulting in a longer and more intensive intervention.
The reason is not biological. The overall rate of diagnosis for autism spectrum disorders is the same among all racial groups.
Last year, researchers at Florida State University found that multiple barriers exist that lead to the later diagnosis of autism in African-American children. These include lack of access to quality care and social stigma. There may also be cultural differences in parental perceptions of behavior.
"Families respond to behavioral challenges and quirky manners in many different ways," explains autism expert Dr. Margaret Souders PhD RN in an article about health disparities in Penn Nursing's UPfrontmagazine. "Some families may not seek help from the healthcare system but rather reach out to extended family for ideas on how to handle their children."
Dr. Martell Teasley, an associate professor at Florida State’s College of Social Work, says that African-American families often have a mistrust of mainstream healthcare providers due to past discrimination, leading them to seek help among family and friends instead of getting the medical resources they need. “There are not enough health care professionals who understand the cultural norms and attributes of the African-American community,” he notes.
“Intervention for any autistic child needs to start around age 3, so we can get the child to begin to learn how to eat right and develop normal, healthy routines, which will result in a better developmental outcome,” Teasley said. “Later intervention will result in a poorer developmental outcome that can have a lasting impact on the child’s and family’s quality of life.”
Parents can and should be empowered to take action. ASD Concepts, founded by Crystal Brown, offers six steps all families can take to overturn these disparities and get their children the help they need.
• Be persistent! Parents and caregivers must be persistent and get their child's healthcare providers to listen and act in response to your concerns.
• Know your child's rights! Learn about the federal special education laws and state regulations which exist to ensure your child with a disability receives an Individualized Education Plan and related services they can benefit from in the least restrictive environment.
• Seek help! There are advocacy groups and educational advocates accessible to help you get a "free appropriate public education" that every child with autism is legally entitled to. Access any needed supports and services provided by your state.
• Join a national autism organization. There is power in numbers. Our voices can and will be heard within a powerful group message.
• Get involved! Attend local parent support group meetings to learn what issues are important to persons with autism and their families, and what steps are necessary to address them. Start networking with other parents.
• Take action! Write or call on local and congressional lawmakers to report your issues and concerns. Make them alert to how autism affects your child and family.
University of Pennsylvania School of Nursing: UpFront, Why Health Equity Matters, Spring 2013
ASD Concepts LLC. Disparities Among African Americans With Autism