Why African-American Children with Autism are Falling Behind
Areva Martin, Esq.
Autism is not a white disorder. Children in the African-American community get autism just as often as anyone else. But they are diagnosed later — and misdiagnosed more often.
A white child with autism is almost 3 times more likely to receive an accurate diagnosis of autism on their first visit to a specialist, than a black child.
Why is this happening and how can we stop it?
With autism, early intervention can make the difference between a child who learns to speak and goes to a regular school with his peers, and a child who is increasingly isolated and develops far more serious symptoms of the disorder.
Children diagnosed as early as 18 months to 3 years have the benefit of preschool intervention programs in their most formative years. The average African-American child with autism is not diagnosed until they are 5 years old. Lack of early intervention can negatively affect a child for the rest of his life.
It is vitally important that African-American children with autism are diagnosed as soon as possible, so they can receive the care and treatment they need when it matters most.
Why is this happening? A Dangerous Disparity in Care.
Research consistently shows that African-American children and other minorities do not receive the same quality of medical care as non-minority children, even when their insurance and income are the same.
The disparity was so obvious that the federal government set a goal to eliminate racial disparities in health care by 2010. Unfortunately, little progress has been made. The Journal of the American Medical Association recently reported on research at Harvard and Brown universities that showed a persistent racial gap in health care services.[ii]
Studies have revealed a variety of reasons for this disparity:
- lack of preventative screening
Doctors who treat African-Americans are often less knowledgeable about prevention and less likely to be certified in special areas, such as autistic diagnosis.[iii]
- free or low-income treatment is often inferior
Because of this, many African-Americans receive primary health care from a separate and less reliable medical system.[iv]
- lack of access to experts
A study in the New England Journal of Medicine showed that African-Americans are more likely to see doctors who have no standing with experts and cannot harness the full potential of the health system. Geographical segregation can also contribute to this lack of access—for both referring doctors and their patients. [v]
- no regular care practitioner
African-Americans are less likely to return to the same doctor over the years. As a result, the pediatrician who may have noticed autistic symptoms developing in a child, is less likely to recognize changes.[vi]
- discrimination and bias
A majority of African-American patients (80%) see a surprisingly small enclave of doctors nationwide (20%). Most of these doctors are white, provide more free and low-income care. Although many have chosen to worked with disadvantaged patients, conscious and unconscious biases can lead to discrimination. Autistic symptoms can be misinterpreted as behavioral problems, caused by living in a difficult environment.[vii]
How can we stop it? The Solution is Advocacy.
Advocacy can make the difference. African-Americans demonstrated the transformative power of standing up for our rights and speaking out during the Civil Rights Movement of the 1960s. Although we still have a long way to go, permanent and undeniable changes were made to our culture because people took a stand.
In a magnificent testament to the effectiveness of that advocacy, the President of theUnited Statesis an African-American man.
Our need to advocate for our special needs children is as compelling today as it was forty years ago–before the passage of civil rights legislation or disability rights laws. Fortunately for us, the civil rights icons–like Martin Luther King, Jr., Julian Bond, Rosa Parks, Andrew Young, James Farmer, Robert Burgdorf, Tony Coelho, Tom Harkin and thousands of others–have made the way clear.
By standing up as advocates, we have an opportunity to walk in their great footsteps and take part in the vital and historic struggle for human rights—a struggle that today involves the more than fifty-four million Americans living with disabilities and the hundreds of millions who love and care for them.
Parents of color have a unique opportunity to become powerful advocates for their children and to join the cadre of men and woman who continue to fight for equal opportunities for African-Americans to get equal medical care, jobs, education, and housing.
Five years ago, I formed the Special Needs Network, Inc. (SNN), inSouth-Central LA, to bring attention to the epidemic of autism and other developmental disorders–especially in the African American community–and to offer resources and other ways to navigate through the bureaucratic red tape to obtain services.
My book, The Everyday Advocate: How to Stand Up to Your Child with Autism (Penguin, 2010) was written to teach every parent the critical advocacy skills they need to make sure their child gets the help they need. It time that more parents knew that all children with autism are eligible to receive a free public education, services provided by the states, behavioral treatments, and classroom training appropriate to their condition.
The Principles of Advocacy described in The Everyday Advocate will empower parents to end the disparity in treatment received by African-American children, so they can get the diagnosis, treatment and services they deserve.
 Megan, Kathleen. “Parents, Advocates Seek More Prompt Diagnoses Of Minority Children.” Autism Today. Accessed February 2010. http://www.autismtoday.com/articles/Autism%20And%20Race.asp?cat=1
[ii] “Blacks Continue to Lose the Health Care Battle: Better Health Insurance Doesn’t Mean Better Care for Blacks,”ABN News. (Oct. 24, 2006) Accessed February 2010. http://abcnews.go.com/Health/story?id=2602636&page=1
[iii] Dembner, Alice. “Disparities found in health care for blacks.” Boston Globe (August 5, 2004). Accessed February 2010. http://www.boston.com/news/nation/articles/2004/08/05/disparities_found_in_health_care_for_blacks/?page=2
[vi] Mandell, David S., et al., “Race Differences in the Age at Diagnosis Among Medicaid-Eligible Children With Autism.” Journal of the American Academy of Child & Adolescent Psychiatry (December 2002) 41:12, pp. 1447-1453.
http://www.journals.elsevierhealth.com/periodicals/jaac/article/PIIS0890856709607395/abstract Accessed February 2010. Excerpted at http://www.child-autism-parent-cafe.com/disparities-among-african-americans-with-autism.html
[vii] Dembner, Alice.