Autism affects 1 in 68 children, regardless of their skin color or ethnic backgrounds. But, responses to the signs of autism vary, especially in minority communities. Monika Brooks, a California mom with a child on the spectrum, founded the Mocha Autism Network to help change perceptions of autism in her community and surrounding ones.
What led you to form the Mocha Autism Network?
When my son was diagnosed on the autism spectrum at age 4 (he's now 15), accessing information and finding resources were huge challenges. These challenges were coupled with many assumptions made by school administration regarding my son and children like him. We had to take many unnecessary steps just for simple services. In speaking with other parents of color, I determined there was a need to create a safe space for parents, relatives, educators, and community leaders to obtain resources, eliminate stigmas, and find support for our children.
Recent statistics have determined that Black and Latino boys are diagnosed, on average, three years later than other children. Girls are diagnosed even later. In California, only 10 percent of pediatricians have Spanish language Autism Assessment packets. There are large segments of the population being seemingly ignored, and this issue is affecting how America's underrepresented children are educated, tested, and trained in American society.
What are some of the challenges faced by underrepresented parents?
- The assumption that behavior problems of our children are based on bad upbringing instead of something neurological.
- The socialization of our communities leans towards a distrust of institutions.
- Many in our community don't want to be stigmatized as "special needs."
- Lack of knowledge on autism traits, ADHD, and other "invisible" challenges makes it difficult for parents to know when to ask questions.
These things (as well as others) make it hard to obtain accurate or timely diagnoses. A timely diagnosis is the beginning of the challenges facing parents with children on the spectrum.
What are some of the greatest challenges you and your organization have faced so far?
We are a small and new organization with a specific audience. Because of this, we aren't taken as seriously, usually as organizations with bigger names or budgets associated with them. Another challenge is that, because of the lack of information in communities of color, we have a different starting point. We also have more expansive topics which include: institutional racism, police brutality, fear of stigmatization, and micro-aggression by larger organizations that do not have the interest of our communities in their agenda.
What are the ways that you've overcome these challenges? How are you helping educate, advocate, and support individuals with autism and their families?
The goal of the Mocha Autism Network is to provide what we call the 3A Strategic Mission:
AWARENESS - Help promote awareness of not only autism spectrum indicators, but also the assessment process, how an Individual Education Plan is done, and the rights of parents/students.
ADVOCACY - Promote and help develop strategies/tools for parents and children; they need to know not only who to ask for help, but what to ask for.
ALLIANCES - Provide networking opportunities for parents and children who are working through the autism spectrum, such as much-needed fellowship, advice, and support.
We are working step-by-step through networking, parenting groups, and programs like the "Royal Blue For Autism Awareness" social media campaign. We are asking people to use their electronic capital to enhance awareness of autism and its traits in communities that aren't usually included in major campaigns. The campaign includes informative articles, guest writers, and resources mainly focusing on communities of color and autism in families of color. Sites like Facebook, Twitter, and Instagram are great equalizers in awareness for our communities.
Is the Mocha Autism Network local or national? How can I help people in my community connect with it?
We are a local organization right now in the Bay Area of California, with national contacts. We compile best-practice techniques with other organizations across the country to better our approach and outreach. We can be contacted at mochaautismnetwork.com, and the "Royal Blue For Autism Awareness" campaign can be found at royalblueforautismawareness.com.
For more info, visit:
Jamie Pacton lives near Lake Michigan where she drinks loads of coffee, dreams of sailing, and enjoys each day with her husband and two sons, Liam and Eliot. Find her at www.jamiepacton.com, Facebook (Jamie Pacton), and Twitter @jamiepacton
Early Signs of Autism
Image provided by Monika Brooks