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Autism Awareness and Advocacy in Our Community

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While autism is a condition affecting people in all sectors of society, socioeconomic disparities influence its diagnosis and treatment among African-Americans. Given this unique impact, it is important for us to galvanize and increase awareness about autism in our community.

Autism spectrum disorder (ASD) is a lifelong developmental disability defined by diagnostic criteria that include deficits in social communication and interaction often accompanied by restricted, repetitive patterns of behavior, interests or activities (U.S. Centers for Disease Control and Prevention).

Although mainstream society sometimes characterizes autism through unfortunate stereotypes, the experiences, challenges, and victories of those living with autism are multifaceted. As research and treatment services increase our knowledge of the condition and suggest new strategies for living with it, more and more individuals and their families lead successful, self-determined lives.

"A lot more is known about autism among the general population now compared to just a few years ago. Clinicians are now better able to recognize autism symptoms, and more evidence-based services are available in the community," states Dr. Amy Daniels, assistant director of public health research with Autism Speaks. "However, autism is a condition that is shaped by early diagnosis and early treatment," Daniels adds. "There are tremendous disparities in attaining diagnosis and identifying appropriate services for treatment."

One in 68

The U.S. Centers for Disease Control and Prevention (CDC) recently reported that one of 68 U.S.-born children has an autism spectrum disorder. The same study also reports that the prevalence of ASD diagnosis is smaller for African-American and Latino families. Per 1,000 children included in the comprehensive 11-site survey, the prevalence rate was determined to be 15.8, 12.3 and 10.8 for white, African-American and Latino children, respectively.

The CDC's study also reports that 48 percent of non-Hispanic black children and 38 percent of Latino children with autism are diagnosed with an intellectual disability, compared to 25 percent of white children. Disparities in early diagnosis and treatment, and a tendency to disproportionately misdiagnose children of color, have risen as points in discussion of this recent statistical revelation.

Awareness is Action: The Importance of Raising Awareness Among black and brown Communities

In recent years, awareness campaigns have been key in supporting the experiences of individuals living with autism. The advocacy efforts of organizations like Autism Speaks have tremendously affected funding for research and increasing the accessibility of information and services. More and more groups have brought public attention to autism spectrum disorder, highlighting it as an important national topic.

However, greater awareness and understanding about autism spectrum disorders is still needed in our communities.

Socioeconomic disparities linked to race often prevent ASD-related information and treatment from reaching black and brown communities. With many cases of ASD, early diagnosis and treatment is critical in determining the trajectory of a person's experience navigating the world with autism. Data shows that black and brown individuals on the spectrum are likely to be diagnosed later and receive relatively less treatment services. "When we look at the national data with regards to African-Americans, we see a delayed diagnosis of one to three years," asserts Dr. Celine Saulnier, clinical director for research at the Marcus Autism Center in Atlanta, Georgia. "Access to services post diagnosis for certain communities is often limited as well, which may present preventable challenges for children and their families."

Dr. Michael Hannon, an assistant professor of school counseling at Brooklyn College in New York, conducts research on black fathers of children with autism; He believes that public awareness of autism will increase within the African-American community as those affected by autism take active steps to learn about the diagnosis and seek information about health care and child development. "With any diagnosis, there is always the task of becoming oriented with it. Knowing, learning, and ultimately, advocating for persons of color living with autism, often requires intentional and active engagement." Dr. Hannon further asserts that the professional community of service providers can bolster its efforts in providing information and services to communities of color. "Counselors and other clinical and helping professionals need to get better connected to our communities. I would like to see counselors, doctors, and mental health professionals get to the places where we [African-Americans] are so that we can be more hopeful in seeking information and services."

In addition to being a counselor educator and advocate for families raising children with autism, Dr. Hannon is also raising a 10-year-old son with autism with his wife LaChan. He believes that people of color living with autism can directly and indirectly also play a vital role in spreading awareness in our community. "In many cases, parents and caregivers have to assume the role of teacher or advocate for family and community members unaware of autism and its diverse presentations," Hannon promotes. "However, that can be taxing and wear on your mental health and well-being, so it's critical for those parents and caregivers to have a space where they can be honest and transparent about their situations and make sure that they have a community of people can provide support."

Donna Johnson, a mother of a 16-year-old daughter with autism and the founder of the Kiss Foundation, which provides ASD related services and training for families and businesses, strongly encourages everyone to support the spread of awareness about autism. "If you own of a business or organization, you can seek training and learning appropriate language and etiquette or make an effort to extend services to those on the spectrum," Johnson states. "If you know of someone that has autism, you can take the time to learn about it and see where you fit in with advocating in ways that work for you. There is so much that can be done."

A Few Resources Worth Checking Out

For information about raising awareness during National Autism Awareness Month (April), click here.

To watch the trailer of the "Colored My Mind," a docu-feature film about autism in black and brown communities, click here.

For information about collaboration between black churches and Autism Speaks, click here.

For information and resources about autism advocacy, click here.

For more information and resources designed to provide support for students with autism in school settings, click here.

For information about the Autism Speaks Autism Treatment Network, a collaboration of medical centers dedicated to providing multidisciplinary care for families, click here.

 
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