Understanding autism as World Autism Awareness Week approaches

March 26 through April 2 marks World Autism Awareness Week. Autism is a hot button issue in mental health, with more than one million American youths under the age of 21 being diagnosed with the disorder according to figures from Autism Speaks.

Until the 1990s, autism was very puzzling to care professionals and families alike. The causes of the illness remained mysterious and still are not entirely known today. What is known is the potential for struggle that coping with autism can bring individuals and families alike.

“Autism is a life-long developmental and neurological disability that affects the whole family,” said Marina Jorge, Onslow County Chapter of the Autism Society of North Carolina chapter leader. “It affects people differently with varying degrees of severity. Most challenges for individuals on the autism spectrum are in areas of social interaction, communication and repetitive restrictive behavior.”

Autism is now more commonly referred to as autism spectrum disorder. According to the Diagnostic and Statistical Manual of the American Psychological Association, autism spectrum disorder is used as an umbrella term to describe a person with those characteristics under this diagnosis regardless of how one functions or is perceived to function with the disorder.

“I think it’s important to stick to terms like autism spectrum disorder because many times you will find a child with this diagnosis grows by leaps and bounds developmentally,” said Jorge. “Meaning, they may not always function at what one may consider to be severely autistic. Many families will tell you that their child is severely autistic because they are nonverbal. However many nonverbal individuals may communicate via sign language, picture exchange systems or need assistive devices such as an iPad to help them get the words out. I believe that whether you use terms such as ‘low functioning’ or ‘high functioning’ you are setting limitations on the person with autism and are either not focusing on their strengths or not addressing their specific challenges.”

There are several signs that your child may have autism spectrum disorder. These include avoiding eye contact, wanting to be alone, trouble understanding people’s feelings, trouble adapting to changes in routines, and showing distress for no apparent reason. Jorge recommends caregivers should first go to their child’s primary care provider who can refer them to a specialist for further testing and diagnosing.

“It is different for everyone, much like the diagnosis affects people on the spectrum differently,” said Jorge. “The first step is to get the diagnosis so that early intervention services along with therapies can be initiated for the child to have the best outcome. The diagnosis is used in the public school systems to develop Individual Education Plans to provide the child with accommodations to provide them an appropriate education to best meet their needs and challenges.”

Some therapies utilized in treating autism include applied behavior analysis therapy, speech therapy, occupational therapy, developmental therapy and several others.

Jorge emphasized the disorder does not have to define the life of the individual who has it. Given early intervention services and continued support, individuals on the autism spectrum can flourish. Adults with autism spectrum disorder can function in society very well, hold jobs, drive and have families of their own.

“I think as a parent of a child with autism myself, the diagnosis was overwhelming, scary and isolating,” said Jorge. “It can completely take over your life and you forget that your child is much more than this diagnosis. Remember to take care of yourself so that you can fully take care of your loved one. Be sure to connect with others who are touched by autism and lean on each other for guidance and encouragement. You are not alone on this journey.”

For more information on available resources, visit www.facebook.com/groups/asnc.onslow or www.trilliumhealthresources.org.