In the past decade, we have learned much more about autism spectrum disorder (ASD) and chances are that you know someone close to you diagnosed with the disorder. In 2014, the Centers for Disease Control and Prevention (CDC) identified that 1 in 68 children (1 in 42 boys and 1 in 189 girls) have been diagnosed with ASD. Based on the numbers that the CDC has seen over a ten-year period, prevalence has increased by approximately 6-15 percent each year, a startling increase. Family First Health physician, Dr. Marie Kellett notes that she has also seen an increase in her work. “I am not sure if we are recognizing it more or if the prevalence has really jumped that much. In reality, it is probably a mixture of both. The wonderful news is that the sooner we diagnosis a child and get the proper support and guidance many of these children can grow socially, academically and function very well.”
April is National Autism Spectrum Disorder Month and a chance to explore the disorder, openly talk about the challenges that families face, and decrease the stigma around ASD. A developmental disability, ASD is characterized by a difficulty in communication and social interactions, sensory sensitivities, and behavior issues. Although these are some of the characteristics that “define” ASD, the behaviors, treatment and outcomes are extremely different for each person. You may find that a person with ASD will have, what some may consider, unusual behaviors, and because of this, they face certain stigmas. Deirdre Ward notes, “Families with kids on the spectrum each have their own unique struggles on top of the norm. We have to deal with other kids or people judging us and our children due to the way they speak/act/react to certain social situations, school, friends (or lack thereof).” It can be exceptionally difficult for the person with ASD; for Deirdre’s son Liam, he was not invited to birthday parties when he was in elementary school because he was looked at differently. For Rebecca Anhorn, bullying is a very real concern for her young son Gideon. “I am aware of how bullying is so prevalent in schools now and concerned about how school will be for each year for him.”
While individuals with autism spectrum disorder face being treated differently, they also thrive when they can focus on something of interest. Jazz pianist, Matt Savage, diagnosed with ASD when he was three years old, is an incredible musical prodigy who taught himself how to play the piano. Actress Darryl Hannah, also diagnosed as a child, has gone on to star in many films. The Autism Society shared that while autism is treatable; it is not something that can be “outgrown”, although studies show that early diagnosis leads to improved outcomes.
The behaviors, road to diagnosis, treatment, and outcomes are different for each person with autism spectrum disorder. For four-year-old William, it is a fight to get the services that he needs. His mom, Jennifer, states “A lot of times we are treated like we are overreacting and that they will outgrow these behaviors. The state encourages early intervention, but when you go to get those services, they will give you as little as possible.” She shares that they are incredibly lucky to have good insurance that pays for those intensive services, which would normally cost $30,000 a month; otherwise, they would only be eligible for one hour a week for services. Deirdre notes that sometimes you need to fight to make people listen to you, especially in the education system where an individualized education plan (IEP) is important to help a child with ASD to focus on goals. “Be a thorn in their side until they listen and help your child, if things aren’t being done to the ‘T’ of said IEP, or you are unhappy with how things are done, call a meeting. It is our child’s right to get the best education the state has, never give up.”
Other families have run into similar issues with state and educational system assistance and resort to doing their own therapies and treatments at home. Behavioral therapies play a large role but some children respond better to different treatments, such as animal-assisted therapies. The idea is that there are many different options and that it takes work to find the treatments that will work for the individual. Create a care team by working closely with your medical provider, therapists, and friends and family to find the right ways to address autism spectrum disorder for your loved one.
A very special thank you to an incredible group of women: Rebecca Anhorn, Jennifer Beamer, and Deirdre Ward, for their input, and to their amazing children with ASD.