Real Moms, Real Topics: Raising an Autistic Child
Out of the Box
By Mary Dixon LeBeau
In this article:
Perhaps you’ve seen it, a ribbon comprised of colors on someone’s lapel or even on a car magnet. It’s similar to the pink ribbon that symbolizes breast cancer, the red ribbon for AIDS awareness, or the familiar yellow that shows support for our troops. And yet, this ribbon is different, made up of several colors which appear from a distance like stained glass. Upon closer observation, however, you’ll see the ribbon is made up of a scramble of puzzle pieces, a variety of sizes and shapes and colors. A most appropriate ribbon indeed, as this patchwork jigsaw symbolizes the puzzle that is autism. The pattern reflects the mystery and complexity of the various spectrum disorders covered by the umbrella-label of “autism.” The colors reflect the variety of people and families affected by the disorder, while the brightness reflects the hope of continued research and growing awareness.
According to the Easter Seals Society, autism – or, more formally, Autism Spectrum Disorder (ASD) - is a developmental disability considered the result of a neurological condition affecting normal brain function, development, and social interactions. Those affected by the disorder may struggle to relate in a meaningful way to other people. They also may show repetitive or restrictive patterns of body movements or behavior. There is no known cure and, to date, no singular effective treatment for autism.
Under the umbrella of ASD, there are five distinctive developmental disorders. These are:
• Autistic Disorder – more prominent in males by a 4:1 ratio, involves moderate to severe impairment to behavior, communication, and socialization.
• Asperger’s Syndrome – often diagnosed later in life, Asperger’s is often considered a milder form of autism. Many with Asperger’s show no delay in milestone language skills and perform in the average to above average intelligence range. However, they struggle with social skills and repetitive or restrictive behavior.
• Childhood Disintegrative Disorder – involves considerable regression in previously acquired skills and delays or deficits in behavior, socialization, or communication.
• Rett Syndrome – more prominent in females who seem to develop normally until five to 30 months of age, when they will begin to regress. Repetitive, meaningless gestures, or movement is a major indicator of Rett syndrome.
• Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) – used to describe those who do not meet the criteria for specific disorders or do not show the degree of impairment usually associated with the disorder. This has been used as a blanket diagnosis when a person doesn’t fit neatly into one of the other “boxes.”
Although autism cases are as different as the faces of the children affected, there are five behaviors considered red flags by the Eunice Kennedy Shriver National Institute of Child Health and Human Development. These developmental milestones include:
• Does not babble or coo by twelve months.
• Does not gesture, point, grasp, or wave by twelve months.
• Does not say single words by sixteen months.
• Does not say two word phrases on his or her own by 21 months.
• Has any loss of any language or social skill at any age.
These indicators are not a diagnosis in themselves, but a sign that your child needs further evaluation. This evaluation should be done by a multidisciplinary team, including a neurologist, speech therapist, learning consultant, and other professionals.
According to the Center for Disease Control (CDC), autism affects one child in every 150 births. Right now, this totals 1 to 1.5 million Americans, according to the Autism Society of American. It’s the fastest growing developmental disability at 10 to 17% annual growth.
Behind the numbers, there are people – children and parents, families who deal with the disorder and its manifestations on a daily basis. For them, April may be Autism Awareness Month, but every day is a struggle, and every small step a victory, as they lead their lives outside the box and beyond the normal they once envisioned.
We invite you to share the stories of four moms “outside the box,” raising their children under the umbrella of autism. They’ll share their confusion, their efforts, their disappointments and, yes, their joy – all in their own words.
Related Features:
