Life-changing resources that bring together families, professionals and
teachers for the benefit of children with Autism Spectrum Disorder
By Beth Krueger
The recent college graduation of Jane Ann Worlock’s son was a time to celebrate his accomplishments and think back on his journey of learning and perseverance, a road that began in 1997 when he was diagnosed with autism at 2 ½ years old by a developmental pediatrician.
Not every child on the spectrum is diagnosed that early, especially 20 years ago – but research, resources, and awareness of professionals and the public have come a long way since autism arrived on the Worlock family’s radar. In the Capital Region, the University at Albany‐based Center for Autism and Related Disabilities (CARD) has become a hub for research, evaluations, and practice, plus training for professionals, schools, and families (Worlock herself is now a senior trainer there). In its nineteenth year of service, CARD Albany serves a 21‐county area and, for the past decade, as headquarters of the statewide network of six other regional centers, which are funded through New York State Education Department grants.
At the helm is director Kristin V. Christodulu, PhD, who cites the importance of having the research, clinical, and education services under one roof, as well as the combined expertise of psychology, behavioral analysis, education, social work, and rehabilitation counseling. Dr. Christodulu is also a Clinical Associate Professor of Clinical Psychology at the University at Albany and coordinator of the regional network. Her work in autism grew from her research on child development.
A group of developmental disabilities involving the brain are now recognized as within autism spectrum disorders (ASD). Included are conditions that previously were diagnosed separately, among then autism disorder, Asperger Syndrome, and pervasive developmental disorder. The causes are still not specifically known, although most scientists agree that genetic factors may place an individual at increased risk. Biological/brain development and certain environmental conditions also could be elements. Research is ongoing.
Dr. Christodulu explains that there’s no medical exam, such as a blood test, that will identify ASD; the diagnosis comes from considering the child’s development and behavior. The disorders extend into adulthood, and the Centers for Disease Control (CDC) reports that autism is about four times more prevalent in boys than in girls.
Signs of autism spectrum disorder can include problems in social interaction, emotional skills, verbal and nonverbal communication, repetitive movements, and inflexible adherence to routine with difficulty adapting to change. For example, Dr. Christodulu says, a child may throw a book to show they want something rather than raising a hand. These challenges may be mild or severe, and intellectual ability can range from exceptional to extremely challenged. About 31% of children with ASD also have an intellectual disability.
There is no cure at present, but intervention treatments in social skills, behavior, and communication have been found to improve life functioning. Healthcare professionals cite the importance of diagnosis as early as possible to pursue these adaptive skills and related treatment. While diagnosis can be made responsibly for children as young as 18 months, Dr. Christodulu says, most diagnoses still occur after age 4. She urges parents to express concerns about the development and behavior of their children to their pediatricians and points to the guidelines of the American Academy of Pediatrics that recommend screening for autism for children 18 – 24 months in well‐baby developmental assessments (see autism initiatives at aap.org).
“Knowing my child”
When Jane Ann Worlock’s son was diagnosed with autism 22 years ago, resources and awareness were not plentiful. “I worked in health and human services so was not totally unfamiliar,” she says, but it was a time of learning on their own for the family. The son was already in early intervention speech delay, so the new autism diagnosis was added to his special education. “Much of what we did at home was by instinct,” Worlock says. Because of his young age, her son was not yet able to read, so she drew pictures to explain desired actions—time to get dressed, for example. “That was knowing my child and what worked for him.”
Worlock’s son graduated from high school with a Regents diploma and went on to earn an Associate’s degree from community college and a Bachelor’s degree from Russell Sage where he lived on campus, gaining the experience of living and socializing with other students. He is now working. “Encourage independence appropriate to the child’s age and teach them to advocate for themselves,” she advises. That may be learning to dress themselves at an early age, later cooking a simple meal, and so on as they grow.
Currently, a senior trainer at CARD Albany who covers parent education, Worlock emphasizes the value of education about ASD for teachers as well as family, and the use of a coordinated approach. If the child doesn’t understand, she says, they may appear disinterested or, by refusing to move to the requested activity, may seem to be disobedient.
For parents who have just received their child’s ASD diagnosis, Worlock encourages them to seek the help and expertise of professionals, but “be confident that no one knows your child better than you do.”
With Community Caregivers’ Developmental Behavioral Pediatrics, CARD Albany offers diagnostic and psychosocial assessments for ASD for individuals 18 months to 21 years of age. Given the challenge of diagnosis for ASD, assessments are also made for intellectual disability, attention‐deficit/hyperactivity disorder, anxiety, depression, and other disorders that present similarly ASD or that also may be present.
“Our programs are evidenced based, using what we know has been shown to work,” Dr. Christodulu says, explaining that the added education helps increase the quality of life for the family by reducing anxiety about parenting a child with ASD. “’Let’s Play’ teaches parents tools to interact with their infants and toddlers and build the little ones’ social and communication skills.” In addition to programs for children ages 3‐12, there are workshops for teens with role‐playing and demonstrations on building and keeping friends, and handling social situations; it is accompanied by concurrent sessions for parents or caregivers so they can learn how to be social coaches. “Collaboration in training does not stop in the healthcare office and at home,” she adds. “The Center also provides consultation and education for school personnel and other community professionals to increase awareness of the disorder, how it presents, and appropriate approaches.“