Discovering Autism: Key Challenges Parents Face with Autism

An estimated 1 in 88 children is diagnosed with some form of Autism Spectrum Disorder (ASD) at age 8. As Autism Awareness Month gets underway, it is a time to spread more awareness about the complexity of this disorder that affects so many children and their families. ASD is a neurodevelopment disorder, characterized by social impairments, communication difficulties and restricted, repetitive and stereotyped patterns of behavior.  Three main issues that most families struggle with when it comes to ASD are: receiving the diagnosis, handling the perceptions of others, and deciding on a course of treatment.

Coming to terms with and wrapping your mind around what is happening to someone you love can be difficult to deal with. Many parents struggle for years to find an accurate diagnosis, and once they finally do get one, they wonder what they should have done differently or what having ASD will mean for their child growing up. Guilt is a common feeling among parents whose children have been diagnosed. However, with the feeling of guilt also comes a feeling a relief because they now have an explanation for their child’s behavior and a direction to move forward.  

The perception of others is another issue with which parents sometimes struggle.  When a child acts out or behaves atypically in public, the behavior can attract unwanted attention from others who often don’t understand that the child has autism and question the parent’s parenting techniques or skills. Some parents wonder if they should walk around with a t-shirt that says “my child has autism,” as it seems to be the only way others can understand that there are medical factors behind the behaviors they are witnessing. Learning how to deal with the public and even with other family members is a challenge for many parents, but understanding just how many families are dealing with ASD may provide some comfort.   

Finding the right course of treatment can be another area of concern, since there is no one specific treatment for every person that has autism. ASD varies significantly in character and severity from one individual to the next, which underscores the importance of individualized treatment plans for each child diagnosed.

The good news is that a range of treatment options are available and they are constantly improving and providing families with hope for the future and the help to keep working with their child.

In the short term, behavioral treatments are proven treatments that have helped those affected by autism, and they are being further researched and refined. Research also is currently underway to look for a bio-marker for autism and to try to determine sub-types of autism. The more we can learn the better treatments we can come up with.

For parents who suspect that there is something going on with their child, it is advised to take the steps necessary to have a thorough evaluation.  Early diagnosis can go a long way towards getting on the right treatment plan at an early age and lead to an enhanced quality of life for their child and greater peace of mind for impacted parents. 

Dr. Dr. Stephen M. Kanne is the executive director of the Thompson Center for Autism, whose mission is to improve the lives of individuals and families affected by autism and neurodevelopmental disorders through world class programs that integrate research, clinical service delivery, education and public policy. He is a Florissant native and a graduate of Washington University.