Living a full life with autism
By Allyson Pebsworth
April is Autism Awareness Month and like the millions around the world, we don our blue on April 2nd and show our support all month long. But, how many of those millions of people actually stop to think about what it is that they are supporting?
How many people understand what autism spectrum disorder actually is, the symptoms, or any information in general? This article will shed some light on the disorder and how those diagnosed are affected.
A definition of the disorder per the national Autism Society states, “Autism spectrum disorder (ASD) is a complex developmental disability; signs typically appear during early childhood and affect a person’s ability to communicate, and interact with others. ASD is defined by a certain set of behaviors and is a “spectrum condition” that affects individuals differently and to varying degrees.”
The CDC labeled autism as the fastest-growing developmental disability; as of today, about 1 percent of the world population has autism spectrum disorder (CDC, 2014) with more than 3.5 million Americans living with a disorder on the spectrum (Buescher et al., 2014). It is estimated that in the United States one person is born on the spectrum out of every 68 births, this has risen in recent years by 119.4 percent from 2000 when there was a 1 in 150 chance.
Autism can be seen in several different behavioral abnormalities including but not limited to; delayed learning of language, difficulty making eye contact or holding a conversation, narrow, intense interest, poor motor skills and sensory sensitivities, and difficulty with executive functioning, which relates to reasoning and planning.
A person on the spectrum could display all or a select few of these behaviors, along with several other possibilities. The diagnosis of autism spectrum disorder is generally based on analysis of a person’s behaviors and their severity.
Although there is no known single cause of autism, researchers continue investigating countless theories, including links among genetics, heredity, and even varying medical issues.
In many families, there appears to be a pattern of autism or related disabilities, further supporting the theory that the disorder has a genetic base. While no one gene has been identified as causing autism, those researching the disorder are searching for irregular segments of genetic code that children with autism may have come by inherently.
Some children are also shown to be born with a susceptibility to autism, but there has not yet been a single “trigger” identified as the cause of autism development.
Other researchers are examining the possibility that under certain conditions, a group of unstable genes could be interfering with brain development, resulting in autism.
Problems with pregnancy or delivery, and environmental factors such as viral infections, exposure to chemicals, and metabolic imbalances are also being investigated as problems that might cause the disorder to develop.
While there are many theories to determine a cause of autism, it is generally accepted that it is caused by abnormalities in brain structure or function.
Brain scans show differences in the shape and structure of the brain in children with autism compared to neurotypical children. One thing is clear, increased awareness and access to the appropriate services/supports can lead to outcomes that are significantly improved. However, the costs associated with obtaining the correct services/supports or receiving a diagnosis can be staggering.
In 2014, researchers estimated the lifetime cost of caring for a person on the autism spectrum can be as much as $2.4 million. The Autism Society estimates that the United States is facing almost $90 billion annually in costs for children with autism; costs include research, Medicaid waivers, insurance costs and non-covered expenses, educational spending, housing, employment, transportation, caregiver costs, and related therapeutic services. According Beuscher et al., 2014, autism services for children and adults combined costs U.S. citizens $236-262 billion annually.
There are endless facts and research projects being conducted about autism spectrum disorder, and although those on the spectrum need special therapies, education, and living arrangements, there is nothing that makes them less than the average American.
In today’s society, people are quick to judge a person based on the disorder they are labeled with, not truly looking at the person behind the disorder.
I personally have several people in my family that have been diagnosed with autism and other similar disorders, but have never seen them as unfortunate or undeserving of the love and attention given to everyone else I meet.
Although it is not going to change any time soon, unfortunately, the stigma associated with autism and all other mental health disorders needs to be erased.
My nephew, Zander Jasso, was diagnosed as being on the autism spectrum last year and even though this new journey has been full of ups and downs, Zander is still the same fun loving, exciting, and full of life little boy that I’ve loved since birth.
When talking to me about how his diagnosis has changed the dynamic of their everyday lives, my sister-in-law and Zander’s mother said, “Being a part of an Autistic family is so many things. It is exhausting on a good day and lonely on a bad. It’s finding a new level of patience not only for your child but for those who judge him. It’s celebrating the little things that took months to conquer. It’s hours of therapy and countless waiting room visits. But most of all it is a love unlike any other. My child does not judge or hate. He loves unconditionally and sees the best in everything. I would not change our journey for anything... He is our world.”
As stated earlier, a disorder should not define a person; so keep wearing blue each April and keep supporting autism awareness
The people with this disorder need to know there are people who care and see them for who they really are.