Every April is Autism Acceptance Month, when people and organizations across the county promote awareness of autism spectrum disorder, celebrate neurodiversity and address the stigmas associated with people who think and act differently.
Autism is one form of neurodivergence. One in 36 children is diagnosed with ASD by age 8 in the United States, according to the Centers for Disease Control and Prevention.
The CDCP defines ASD as a developmental disability that can cause significant social, communication and behavioral challenges.
Autism advocacy and support organization Autism Speaks offers statistics by state, and found that “11.2 percent of special education students in New York are receiving special education services for autism.”
Locally, organizations specializing in autism services include Springbrook, The Arc Otsego and the Family Resource Network, Inc. These providers offer specialized educational, residential, behavioral and community support services for individuals with autism spectrum disorders.
Pathfinder Village, located in Edmeston, includes specialized education and services for individuals with autism, Down syndrome and other intellectual and developmental disabilities.
Sheila Andreic founded childcare center Noah’s World in Oneonta for her son, Noah, who was diagnosed with autism spectrum disorder at age 2. Andriec collaborates with the Family Resource Network which supports children and adults with disabilities and offers scholarships through a playtime fund.
Walton resident Amanda Hoover, a mother of two, has been a K-12 special education administrator for the majority of her career.
There is often a stigma attached to children requiring special education.
“If you don’t understand autism and how it impacts the brain, you’ll judge it and create a lot of harm,” Hoover said.
She gave the example of a toddler having a meltdown in a grocery store.
“The tricky part is it is easy to assume that it is the result of bad parenting or a naughty child,” she said. If the brain is overstimulated, it can lead to bad behavior, emotional outbursts or temper tantrums.
In Hoover’s experience as the mother of an autistic 10-year-old son, autism is a social communications disorder. She noticed that her son at age 2 began banging his head when in loud public places. She figured out that when her son was overstimulated, he was unable to communicate what was going on in his body and what he needed.
Many children with ASD have trouble with social interactions, such as making eye contact. They can have other symptoms such as delayed language, movement and cognitive skills, and unusual mood or emotional reactions.
Repetitive behaviors such as spinning or rocking back and forth are some other symptoms of ASD.
There is no medical test to diagnose autism spectrum disorder. Instead, medical professionals must study a person’s developmental history and observe their behavior. Because no simple test for autism exists, diagnosing it requires substantial training in observational techniques.
“Being on the spectrum” is one way of describing the severity of symptoms and what level of support is needed. The three commonly referred to levels of support are some support, moderate amount of support or intensive support.
“Boys tend to be more external,” Hoover said based on her significant training in special education and years of observation. Their behaviors can be interpreted as aggressive or physical. “Girls tend to react with more internal signals such as crying,” she said.
A person can cry when overwhelmed. “Crying is a common, involuntary response to sensory overload, intense emotions, or cognitive fatigue, serving as a release mechanism during an autistic meltdown. It is not a tantrum but an, often uncontrollable, reaction to immense pressure, frequently accompanied by intense sadness, fear, or anger,” said the Dan Marino Foundation.
Dan Marino is a former quarterback who played football for the Miami Dolphins and has a son with autism.
Autistic children may need help naming their emotions. Pointing to a color key can help, as visual clues help non-verbal and autistic children.
Visual schedules and routines are also helpful, Hoover said.
Leah Kuypers is a licensed occupational therapist and educator who created The Zones of Regulation. The blue zone is associated with feeling sad, tired, or bored. The green zone is associated with feeling calm, happy or relaxed. Instead, the yellow zone can signify being worried or frustrated on the negative side or even excited on a more positive note. The red zone usually means the danger zone, being angry or out of control.
According to her website, these four zones are “a globally recognized framework that helps individuals develop the lifelong skill of self-regulation.” Her work centers on the premise that “emotional and behavioral regulation skills can—and should—be taught.”
Hoover noticed that when her son is in the red zone, he feels emotionally unsafe. She learned that any verbal stimulation makes matters worse. He needs unconditional love and patience and a way to calm down his nervous system. Raising the voice is not a good way to calm a child down.
Special educations teachers often remind students who have problems communicating to “use your words.”
Some children and adults with autism are completely non-verbal. Others require speech therapy. Some need occupational therapy. Others require physical therapy and special education accommodations.
Hoover has learned how to manage her own emotions and her son’s behaviors by trial and error.
She said she feels lucky that her son received all of these therapies starting at age 2 when she recognized his symptoms and got him diagnosed.
Autism spectrum disorder looks different from person to person. “About one in four children on the spectrum have profound autism, meaning they have little spoken language and need 24/7 care,” according to Autism Speaks. That is one end of the spectrum.
“Boys are more than three times as likely as girls to be diagnosed,” said Dr. Sarah Vaithilingam, a Bassett Healthcare Network psychiatrist who specializes in the treatment of children and adolescents.
“There is no single known cause of autism,” Vaithilingam said. “Instead, research points to a combination of genetic and environmental factors that influence early brain development.”
There are several behavioral therapies available.
“There is no single standard treatment for autism,” Vaithilingam said, “but early and individualized interventions are widely considered the most effective approach.”
Applied behavior analysis focuses on reinforcing positive behaviors and teaching new skills, and pivotal response training emphasize motivation and social communication.
Breaking learning into smaller, manageable steps with frequent breaks is another method used in schools. Some autistic children do not have the communications skills or social skills to indicate they need to take a break. It is up to the teachers, teaching assistants, and parents to read their behaviors. A student can escalate for the yellow zone of frustration into a red zone quickly which can lead to an angry outburst or self-harm.
Vaithilingam said the Early Start Denver Model is designed for very young children. It combines play-based learning with developmental and behavioral techniques. Studies show it can improve cognitive and communication skills when implemented intensively and early.
Supportive therapies also can play a key role. Speech therapy helps children develop communication skills, while occupational and physical therapy address motor development, sensory processing, and daily living skills.
In some cases, medications are prescribed to manage symptoms like irritability or aggression, making other therapies more effective, she said.
For more information on ASD, visit https://www.cdc.gov/autism/index.html.