Of the St. Louis American
“It impacts more children than pediatric AIDS, diabetes, childhood cancer; it is the leading childhood disorder,” said Areva Martin.
”So given the enormous number of children that are going to be impacted, it really requires all of us to become advocates.”
The advocate-author is talking about autism. Martin is a St. Louis native, now an attorney in Los Angeles. Her book, The Everyday Advocate, teaches fundamentals on how to assert yourself and get the results you want for your child.
When her 11-year-old son Marty was diagnosed with autism at age 2, she found it frustrating that there was no primer to address her issues.
“I needed information on, just, how do I get through a morning? How do I get a child who has meltdowns and tantrums out of the bathroom in order to get to school on time?” Martin said.
“There are so many unanswered questions, and I couldn’t find a good road map.”
With The Everyday Advocate: Standing Up for Your Child with Autism, she has provided parents with that road map. Her book is punctuated with stories about her personal experiences and stories from other families she has worked with through her legal practice and the nonprofit organization she co-founded in L.A., Special Needs Network.
Martin said before her son was diagnosed, and based on what she saw on television and in magazines, she though autism was a Jewish disorder that really didn’t affect African Americans.
“For me, I felt like our voice was not being heard,” Martin said.
“And then to learn statistically that there is a two-year gap in diagnosis and intervention services – that confirmed for me that we needed a deliberate response from the African-American community.”
Martin said the delay stems from a number of reasons, starting with a lack of information about the warning signs.
“When I go into black communities, I still have people ask me, ‘Is it okay if my child isn’t talking by 4?’” Martin said.
“No, it’s not alright if your child isn’t talking by 4. Kids talk at 12 months, 14 months and 16 months. So if you have a 4-year-old that is not talking, that is a huge red flag.”
Martin said another reason for the delay in diagnosis is a lack of consistency in quality medical care. She said in poor communities in particular, families may not see the same health professional or anyone trained in developmental disabilities.
“In white communities, typically, families see that same pediatrician on a regular basis,” Martin said. “So it’s a lot easier to track what’s going on with the child. They will be able to make a referral.”
Have you ever heard of a developmental pediatrician? The specialty was unfamiliar to Martin as well.
“That’s a doctor whose only job is looking at the developmental milestones that the child is reaching and evaluating when there are developmental delays,” she said.
“That’s a particular type of specialist that doesn’t exist in very many communities of color.”
Then there’s the money issue. Martin said getting a developmental disabilities evaluation can cost $2,500 to $3,500.
“Most states do not have comprehensive insurance for autism, which means, even if you have a private health plan, they may not cover that kind of evaluation,” she said.
The author also concedes some of it comes down to bias and discrimination resulting in misdiagnosis.
“Many of our kids are labeled as emotionally disturbed and they are not evaluated as having another developmental disability or a condition like autism,” she said.
One key piece of advice she shares with parents in the book is to document everything. Write it down, keep medical records, pertinent papers, school work. Make audio and video recordings of your child to chart their progress.
Good advice from a writer.
Martin grew up in the Carr Square neighborhood of St. Louis and attended St. Nicholas, and graduated from Rosati-Kain High School. She moved from St. Louis to attend the University of Chicago. For law school she went to Harvard, where she met her husband, Ernest, who is from Los Angeles. The Martins have three children, a son, Marty and daughters, Michael and Morgan.
She will be back home Thursday, April 29 for a book signing at Left Bank Books on Euclid in the Central West End at 7 p.m. At her book signings, she invites families to share their experiences, talk about their children and to meet and connect with other people and organizations like the local chapter of Autism Speaks.
For more information, on her work on behalf of children with autism and their families, go to www.specialneedsnetwork.net. For more information on developmental signs of autism in children, go to www.cdc.gov/concerned. Contact the National Dissemination Center for Children with Disabilities at www.nichcy.org or 1-800-695-0285.