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Why Wait and See?
After early intervention helped her son Matthew, Marlo Lemon teamed up with Kennedy Krieger’s Center for Autism for minority outreach.
When Marlo Lemon’s son Matthew wasn’t talking by 14 months, well-meaning friends and family told her not to worry—after all, Matthew and his twin brother had been born prematurely, so they were bound to take longer to reach their milestones. Despite advice from others to “give it time” and “wait and see,” Marlo listened to her instincts and brought her concerns to her pediatrician. After an evaluation, Matthew was referred to the Center for Autism and Related Disorders at Kennedy Krieger Institute and diagnosed with autism.
For Marlo, the diagnosis came somewhat as a relief, because now she could get him the therapy and services he needed. It was frustrating when friends and neighbors had brushed off her concerns. “They think they have your best interests at heart, because ultimately they want everything to be okay,” explains Marlo. But what they may not realize is that for autism, early intervention can improve a child’s prognosis, and the longer you wait, the less time a child may have for services.
Through the Center for Autism’s Early Achievements program, Matthew received early intervention with speech and play therapy to help develop skills, while Marlo received parent training about what an autism diagnosis means, how to engage and play with Matthew at home, how to be an advocate for him, and how to navigate getting the necessary educational support when he was ready for school. The program also offered workshops for parents on relevant topics, such as communication and sensory issues.
Marlo bonded with the other mothers through Early Achievements and the autism society meetings she had begun attending. But she noticed there were hardly any other African-Americans. “I knew my family was not the only African-American family dealing with autism,” Marlo recalls thinking.
At around the same time, Dr. Rebecca Landa, founder and director of the Institute’s autism center, had conducted research finding that minority toddlers with autism have more delayed language, communication, and gross motor skills than affected Caucasian children. The research also noted that developmental delays may be going unaddressed in minority toddlers until more severe symptoms develop.
Marlo and Dr. Landa began talking, and soon the two had teamed up to do minority outreach for autism in the community. By appearing in videos, being a spokesperson, and helping Kennedy Krieger with advocacy and awareness efforts, Marlo hopes to encourage others to seek services for their children if their gut tells them that something is wrong, even if friends and family try to convince them otherwise.
“Sometimes a family might see things in a child, but it’s not in their culture to say maybe something is wrong,” says Marlo. “They worry it could lead to bitter feelings, so nothing is said.” There is also a fear factor involved, and sometimes the stigma associated with a diagnosis of autism can prevent a child from getting the services he or she needs. “People sometimes resist the label—to use the word ‘autism’ at age 2 and 3 scares people,” Marlo adds. “So if they think there may be a problem, they may not act quickly. But autism is just a diagnosis—it doesn’t have to define your child.”
“Minority outreach is important because we want every child to have the best chance of reaching his or her full potential,” says Dr. Landa. “Early detection of developmental delays opens the door to early intervention, and early intervention improves outcomes. We want to help dispel misconceptions, and bring hope to families so they are empowered to help their children grow in healthy ways.”
For Marlo, getting an early diagnosis put her son on the best path to getting him the therapy he needs to maximize his potential. She used to feel like her boys weren’t really twins because they were so different. Today, at age 7, Matthew and his brother Joshua seem like twins again—they throw the ball with each other, play chase and tag, and interact just like any other brothers.
“I can’t imagine where Matthew would be without early intervention,” says Marlo. “Matthew amazes us.” She adds, “He’s not disabled—his mind just works differently. And it’s an amazing mind.”
Marlo’s advice for others who may be worried about their child? “Be relentless; I don’t want to panic people, but if you think there might be a problem, don’t wait. Get them services while you’re waiting for a diagnosis.”