After six different medical providers examined Tisha Campbell-Martin’s son, her intuition that something wasn’t right was finally confirmed — the diagnosis was autism and he was 18 months old.
It was heart-breaking for the Martins to get the news but also liberating because now they had the answer to what was wrong, even if the why was still a mystery.
Martin is certainly not alone on this journey. The gymnasium was filled with parents and their children listening to Martin’s story. It was day two of the Special Needs Network’s conference, Tools for Transformation: Protest, Participation, Progress, which focused on the critical issues related to autism, developmental and learning disabilities, attention deficit hyperactivity disorder, mental health, education and advocacy.
One in 68 children is diagnosed with autism spectrum disorder. Autism is not a disease. Autism spectrum disorder is a developmental disorder and the term “spectrum” refers to autistic individuals. According to the Centers for Disease Control and Prevention, autism spectrum disorder is the fastest growing disability in America, especially among boys.
Why? The answers are under investigation. For 18 years, Dr. Daniel Geschwind, director of the UCLA Center for Autism Research and Treatment, studied the genetics of autism in African-Americans and co-signed Martin’s experience that on the average it takes six medical providers to make the appropriate diagnosis. The Special Needs Network, founded by attorney Areva Martin, has partnered with Geschwind with the hope to find the answers to the “why” in an ambitious 10 years.
Adding to the complexities of autism spectrum disorder, the National Institutes of Health reports there are no direct tests, blood tests or brain scans to identify autism. Instead, the disorder is based on the parent’s observations of their child’s missed milestones in normal development such as lack of eye contact, hand movements, facial expressions, non-verbal or minimal communication, and other behaviors that are not the characteristics of neuro-typical children.
Quickly after Martin had some time to process her son’s diagnosis, she knew there was no time to lose. Fortunately, she had a battle-tested resource — her friend and autism spectrum disorder activist Holly Robinson-Peete, whose son RJ was diagnosed when he was 3 years old.
Robinson-Peete gave Martin “hope” and told her to “engage” with her son, and get her entire and extended family on the same page about what’s best for her son.
Not everyone has the luxury of having a friend, much less one in the public eye, who can offer solid advice about a disorder that still perplexes medical professionals. The good thing is there are resources available and with organizations like the Special Needs Network, parents no longer have to travel the autism spectrum disorder journey alone.
For children under 3 years old, the Individuals with Disabilities Education Act mandates that regional centers provide services through the “Early Start” program. California has 21 regional centers. For locations and more information, go to http://arcanet.org.
When the child is 3 years and older, school districts are required to provide, free appropriate public education. To find the contact information for the Los Angeles Unified School District, go to http://home.lausd.net.
Robinson-Peete has proved that while autism spectrum disorder is not curable, it is treatable. Her son RJ is a senior in high school and looking for a job.
Autism spectrum disorder does not mean a person is unemployable or that their disability means inability. There are resources to assist in the job search and how to address employment issues, such as AbilityFirst Employment Services, Career One Stop and the Job Accommodation Network.
Available resources are helpful but not enough to close the racial disparity gap. While special needs resources have been impacted in a positive way because of the Affordable Care Act, health disparity is still a problem. African American and Latino children with autism spectrum disorder are under-represented in treatment and services. Your zip code plays in a deciding role in the dollar amount of services available.
For example, in Orange County the allotted amount for services is $18,000 versus $2,000 allocated in South Los Angeles.
The Special Needs Network recognizes the challenges for underserved families to get services and will provide resources. The best course of action for families is to get early diagnosis, participate in programs, get training, advocate and engage in public policy to effect change. Above all, as the mommy experts’ state “don’t let the autism spectrum disorder label or health disparities affect the future of your child.”
Marie Y. Lemelle, MBA, is a public relations consultant, the owner of Platinum Star PR and can be reached on Twitter @PlatinumStar or Instagram @PlatinumStarPR. Please send “Health Matters” related questions to email@example.com and look for her column in The Wave.