April is National Autism Awareness Month. We shed some light on this misunderstood disability and one incredible mama shares her story.
Autism spectrum disorder (ASD) is the fastest-growing developmental disability in the United States. The prevalence of ASD increased by 119 percent from 2000 to 2010, and it’s estimated that more than 3.5 million Americans currently live with it. This begs the question: if autism is so common, why is there still so much stigma surrounding it?
Understanding autism spectrum disorder
The first step toward accepting autism is understanding it. ASD is a developmental disability that affects a person’s ability to interact and communicate with others. Typical behaviors include:
- Delayed language development
- Repetition of words or sounds (echolalia)
- Difficulty making eye contact or carrying on a conversation
- Lack of interest in interpersonal relationships
- Lack of imaginative play
- Narrow or obsessive interests
- Difficulties with executive functioning, including planning and reasoning
- Poor motor skills
- Motor mannerisms, such as flapping hands or twirling objects
- Sensory sensitivities (oversensitivity or undersensitivity to noise, light, clothing or temperature)
While the causes of ASD aren’t well understood, experts do know that the brains of children with autism have a different shape and structure than the brains of neurotypical children. ASD is believed to have a genetic basis and may also be caused by issues that occur during pregnancy or childbirth, such as exposure to chemicals or certain viruses.
Signs and symptoms of autism
While some signs and behaviors characteristic of ASD may start to appear in infancy, they become more obvious between the ages of two and six. Early intervention has been shown to lead to significantly improved outcomes, so talk to your doctor right away if you notice any of these signs in your child:
- No babbling or cooing by 12 months
- No gesturing (waving, pointing or grasping) by 12 months
- No single words by 16 months
- No two-word phrases by 24 months
- Loss or regression of language or social skills at any age
If you do notice some of these signs, don’t panic – your child doesn’t necessarily have autism, but it’s a good idea to have them evaluated to be sure.
A Nashville mom trusts her intuition
As soon as Rosa Rainey started feeding her daughter Annah pureed food when she was six months old, she had a feeling something wasn’t right. Annah couldn’t seem to handle the textures of certain foods and rejected them. But when Rosa brought it up with Annah’s pediatrician, he assured her it was nothing to worry about.
By nine months old, Annah was still struggling with purees, but again her doctor brushed it off. It wasn’t until Rosa brought one-year-old Annah in for an ear infection and her pediatrician wasn’t there that a nurse practitioner took notice of Rosa’s concerns. She immediately referred Annah to the Vanderbilt Bill Wilkerson Center in Nashville for a feeding evaluation.
“We had to wait a few months to get in,” says Rosa. “But at the feeding evaluation, the speech therapist determined that Annah needed feeding therapy. She started going once every two weeks and the feeding therapist quickly noticed that Annah wasn’t doing age-appropriate things. At home, I’d also noticed some questionable behavior, such as constantly twirling objects like play necklaces, repeating things she heard over and over, and flapping her arms and hands a lot. She was also a very picky eater.”
Annah’s feeding therapist suggested that she be evaluated by the Developmental Medicine department at the Children’s Hospital at Vanderbilt University Medical Center. Once again, it took them months to get an appointment. But on March 17, 2015, when she was three years old, Annah was officially diagnosed with autism.
From diagnosis to acceptance
“My heart broke,” says Rosa. “I’d suspected it, but I hadn’t wanted to believe it. The worst part was that the doctor couldn’t tell me if Annah would be able to live an independent life. And when we let our family and friends know about the diagnosis, some were supportive and others weren’t. I think that’s what hurt the most. But in the weeks after receiving Annah’s diagnosis, my husband and I went through the steps of acceptance. I allowed myself to cry, be angry, sad… everything I needed to feel.”
Once she’d come to terms with it, Rosa began looking for services in her area that could help Annah. “They say early intervention is key, so I registered Annah into an early intervention program that provided speech therapy and occupational therapy,” says Rosa. “She also continued feeding therapy, and the doctor recommended behavioral therapy as well. That was challenging for me to find because our health insurance wouldn’t cover it and it was very expensive to pay out of pocket. So it wasn’t until later on, when a new children’s Autism Center opened up in the area, that I was able to find affordable behavioral therapy.”
Three years on, Annah is thriving
“Annah is six now and she’s doing things that I never thought she’d be able to do,” says Rosa. “She used to have such a hard time dealing with change and loud noises, but now she can attend birthday parties without melting down. She even asked to join a youth soccer team recently!”
If there’s one thing Rosa wishes people would understand about people with autism, it’s that there’s so much more to them than their diagnosis. “Lots of people with autism are very intelligent and have unique gifts,” she says. “I know that Annah still has a long way to go, but we’re going to take one day at a time. I can’t wait to see where she goes in life!”
How to get involved
This year, the goal of National Autism Awareness Month is to go beyond raising awareness by promoting acceptance, appreciation and inclusion of people with autism. To show your support, find your local Autism Society affiliate and participate in a special event in your community. You can also wear the Autism Awareness Puzzle Ribbon as a symbol of your support. And last but not least, you can donate to the Autism Society to help improve their services around the country.
For more information on understanding autism, please read our piece on Early signs of Autism: what to look for.