By Peter Kramer
April is Autism Awareness Month, a good time to learn about and focus on one of the more perplexing disorders. On Thursday, April 30, from 1 to 3 p.m., Geri Dawson, the chief science officer for Autism Speaks, an advocacy group, will present a talk entitled “Recent Findings on The Diagnosis, Causes, and Treatment of Autism.†This free, public event will take place at the Southern Human Services Center at 2501 Homestead Road in Chapel Hill.
The current name, Autism Spectrum Disorder, or ASD, reflects the wide range of capabilities of persons with this condition. According to the Autism Society of North Carolina (autismsociety-nc.org; 1-800-442-2762), ASD describes a group of developmental disabilities that affect a person’s ability to understand what they see, hear and otherwise sense. People with ASD typically have difficulty understanding verbal and non-verbal communication and learning appropriate ways of relating. ASD is four times more common among boys than girls and is a lifelong disorder.
Ellen Notbohm, the mother of a boy with ASD, has written an essay titled “Ten Things Every Child with Autism Wants You to Know.†Each statement is a plea for understanding and patience, a request to understand what may look like oppositional or unfriendly behavior.
For example, a child with ASD would like us to realize that “my sensory perceptions are disordered. The ordinary sights, sounds, smells, tastes, and touches of everyday life that you may not even notice can be downright painful for me.†Similarly, “Help me with social interactions. It may look like I don’t want to play with the other kids on the playground, but I simply don’t know how to start a conversation or enter a play situation. Encourage other children to invite me to join them.†Notbohm’s website (ellen.notbohm.com) is written from the vantage point of a parent and advocate.
TEACCH (teacch.com; 919-966-2174), an acronym for Treatment and Education of Autistic and related Communication-handicapped Children, is a highly respected program with nine regional centers in North Carolina. Based at UNC, TEACCH describes its mission as the diagnosis, treatment and education of children and adults with autism and similar disorders.
The “Autism Primer: Twenty Questions and Answers†section on the website is especially helpful, with clear descriptions of the disorder. It notes that ASD behavior ranges from mild to severe. Examples of severe behavior may include highly unusual, aggressive and, in some cases, self-injurious behavior. These may persist and be hard to change. Milder forms of ASD can resemble a learning disability, but the individual may still have significant deficits in the areas of communication and socialization.
One of the newer and interesting groups to address ASD is Autism Speaks (autismspeaks.org). Its website features message boards, community resources and a video glossary section that shows delayed versus “typical†behavior. Though the site cautions against using the videos as a diagnostic tool, they can be useful to parents who wonder about their child’s seemingly different behavior: “individually, features may not indicate a problem; however, in combination, they may indicate a need to conduct a screening or a diagnostic evaluation.â€
Dawson, who did her post-graduate work at UNC and currently holds a position in the department of psychiatry, is a Hillsborough resident. She oversees a research budget for Autism Speaks of $30 million and hopes, she says, “to accelerate the pace and scope of research so that effective treatments will be available to families, causes will be discovered, and eventually a cure will be found.†For more information about Dawson’s talk, which is sponsored by the OPC Area Program, call 913-4055.
Notbohm, the writer and parent, often confronts skeptics who believe that children with ASD would function better if parents were simply stricter or less indulgent with them. With patience and resilience, she says that parents of children with ASD want for their children what all parents want – for them to achieve their full potential and “take their place in society as adults carrying as much of their own weight as possible.â€
Peter Kramer is a clinical social worker in the care management department of the OPC Area Program in Chapel Hill.