Autism Awareness Month

Story by: Danielle Josephine DeWitt

A new autism statistic was released this past week by the Center for Disease Control. It is now estimated that 1 in 88 children have an autism diagnosis—1 in 54 boys and 1 in 252 girls.1 There is still quite a bit of mystery (and opinion) regarding the exact cause(s) of autism, but we do know one thing: as this number continues to rise, so does its cost to society.

Autism Speaks, the world’s largest autism research and advocacy organization, just conducted a study on the cost of autism, and preliminary estimates show that this number has nearly tripled since 2006, costing the U.S. nearly $126 billion. This number includes medical costs such as outpatient care, home care, and pharmacy; and the largest portion includes the nonmedical costs such as intervention services, special education, residential placement, and care for adults who age out of school.2

But I don’t want to focus on statistics here. As someone who has been helping to care for a child with autism for nearly 9 years, it’s a very personal thing.

In May 2003, I met Tim and Michelle and their family. I had been looking for some part-time work while finishing up my master’s degree and they were looking for someone to help with childcare. Tim and Michelle had a 2-year-old daughter, Olivia, and a 6-month-old boy, Sam. I still remember the first time I met them because I had a feeling that this family was going to have a very big impact on my life—and I was right.

Olivia is now 11, Sam is 9, and they now have a younger sister Shaleigh who turned 6 in December. Throughout these nine years, these kids and their parents have become family to me.

When Sam was about two-and-a-half his parents noticed that he was not developing at the rate he should be. His language was delayed and he was having numerous outbursts that involved a lot of self-injurious behavior. When he wanted to tell us something—but did not have the verbal ability to do so—he would become very frustrated, and his frustration quickly turned to anger. He would bang his head continuously on the hardwood flooring, scream loudly, and would be almost inconsolable. It was very difficult and frustrating to watch.

Many doctor visits and tests later, Sam was diagnosed with Autism Spectrum Disorder (ASD).

I think there was relief that they now had an explanation for his behavior, but that was quickly overcome by grief and shock. Receiving the diagnosis is one thing—deciding the best way to move forward is quite another. There would be many decisions to be made and questions to be answered.

While this was happening, I was a student at Grand Valley State University, studying psychology. I had access to professors who were experts regarding autism, and soon found myself immersed in researching the best types of treatment, whether or not Sam might be able to be cured, and what might have caused this to happen.

But most of all, I just tried to be there for Sam, his parents, and his sisters as much as I could. If you know someone who has a child with special needs, that is what they need most—support. I’ve experienced so many amazing, crazy, and not-so-good moments while being Sam’s “helper” these last nine years…

I’ve witnessed the sadness of parents who received this diagnosis for their son, and the nervousness they have with as they look to the future, not knowing if their son will ever be able to live on his own.

I’ve seen excitement and hope as he makes progress or learns something new.

I’ve watched this child go from being completely happy one moment to being so frustrated the next because he cannot express himself.

And, unfortunately, I’ve had to personally deal with people who cannot accept his differences and stare, point, and make inappropriate comments.

But most importantly I have seen the joy that he brings to his family, the support he has of his sisters who love him no matter what, and I have seen the love he gives to those around him.

Sam’s autism is severe. He has no verbal language skills and has not yet been toilet-trained. When he wants something, he has very few ways to communicate that, which causes frustration. He’s very particular about things like music (Earth, Wind, and Fire) and movies (Elmo). He loves to be outside, but can also be a masterful “escape artist” so he needs constant supervision. He’s a non-stop ball of energy, as any nine-year-old boy is.

Most likely you or someone in your life knows a child with autism. If you are out and you see kids who act a little bit differently, no need to stare. We all need to be more accepting and realize that they are trying to be as “normal” as possible.

These kids need the support of their families, friends, and their communities. I encourage you to take a few minutes and visit the website of Autism Speaks (autismspeaks.org), the largest research organization in the world focusing specifically on autism, and learn more about it and how you can help.

1 Centers for Disease Control and Prevention. http://www.cdc.gov

2 Autism Speaks. http://www.autismspeaks.org

Note: There are many local resources for those coping with an autism diagnosis, including:

Autism Society of Kent County: http://www.autismsocietyofkentcounty.org/

Autism Society West Shore: http://www.asws.org/

Hope Network—Center for Autism. http://www.hopenetwork.org Statewide

Autism Resources and Training at Grand Valley State University: http://www.gvsu.edu/autismcenter