asperger’s Syndrome
l e i n Da His first year of life, Daniel Childs endured three intestinal surgeries for a rare condition called Hirschsprung’s disease. For 10 months, instead of changing diapers, his parents changed his colostomy bags. From then on, they assumed Daniel’s anxieties and tantrums resulted from this early trauma. Twenty-three years and many labels passed until they finally discovered their son’s most comprehensive and helpful diagnosis: Asperger’s syndrome. By Nilla Childs As a preschooler, Daniel was labeled gifted. His IQ was in the superior range. He asked questions incessantly, learned to read early and had a clever sense of humor. But dressing Daniel each day made us nervous wrecks. He was particularly annoyed by sock seams. He demanded that each shoe lace be exactly even with the other. Daniel had trouble with transitions. He cried about getting into the swimming pool for lessons and then cried when it was time to get out. He screamed every day I dropped him off at pre-kindergarten. The experienced teacher calmly peeled him out of my arms and distracted him with an activity until I could get away. We asked a child psychologist for help. He labeled Daniel with oppositional defiant disorder and prescribed that we provide more consistent discipline. When it was time for Daniel to enter middle school, he could not bear walking through the crowded
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2013 exceptional child
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Growing up undiagnosed
Daniel, now 31 years old (with parents Steve and Nilla Childs), was diagnosed with Asperger’s syndrome as an adult.
halls and multiple classroom changes, so I home-schooled him for a year. In high school, after his wisdom teeth were removed, Daniel stopped taking the prescribed antibiotics, which resulted in a life-threatening dental infection. For weeks, he had to submit to grueling daily jaw scrapings. The guidance counselor stepped in to help Daniel deal with the overwhelming general anxiety he felt the rest of that year, triggered by that painful event. We knew Daniel was homesick when he went away to college. We knew he did not have many friends, but we thought he was just introverted and shy. But we found out he had not attended class or eaten in the cafeteria for a year. When he admitted he was afraid to walk across campus because he feared people were staring at him, a psychologist agreed he had social phobia and depression. Daniel tried college again a few years later and survived for a while. Through campus disability services, Daniel met a man in his 40s, recently
diagnosed with autism. I recognized their similarities and began to research the characteristics of autism: difficulty with body language, facial expressions, eye contact, posture, back-and-forth conversation, changes in routine; preoccupation with restrictive interests. Daniel was finally diagnosed accurately by the Epilepsy Institute. In recent years our family has learned how to work together to support Daniel’s living independently, everything from finding a job coach to his managing his own health care, budget, condo and car maintenance. Autism does not go away at age 18, but the earlier it is diagnosed, the easier it is for the individual to learn ways to manage their life to the fullest. Nilla and her husband, Steve, raised two sons, Daniel and David. She is the author of the book “Puzzled: 100 Pieces of Autism” (see page 21). To learn more about Nilla, visit nillachilds.com.