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Family nurses interact with children who have Asperger Syndrome (AS) and/or nonverbal learning disorder (NLD) and their parents. Little is known about parents’ experiences raising a child with these neurodevelopmental disorders and how to anticipate their needs as the youngster matures. AS and NLD involve difficulties with social skills, learning, physical movement, and emotional understanding and expression. AS is at the high functioning end of the autism continuum, and it affects social communication and interaction. The children are typically bright and have normal language development, but they have difficulty interpreting emotional information or handling changes in their routines. NLD affects about 10% of children who have learning disabilities. These children have significant visual-spatial disabilities, motor coordination deficits, and problems with social and nonverbal communication. An exploratory qualitative study of the parenting experience used a written open-ended questionnaire with two items: 1) the positive (joyful) aspects of parenting a child with NLD or AS, and 2) concerns for the child’s future. Parents were recruited through two Internet Web sites developed for families with children with AS or NLD. Two surveys (one for each parent) were mailed to interested parties. The 103 pairs of parents who responded were married, Caucasian (98%), and well-educated. The group of targeted children ranged in age from 3 to 21 years (mean age 10.5), and 81% were male. Nearly three-fourths had a diagnosis of AS, and 8% had a dual diagnosis (AS and NLD). The responses were organized by themes and categories. Parents took pleasure in their child’s intelligence and unique personality, learning about the world differently through their child’s needs, and individual time with the child when he was happy, relaxed or doing well. Their major worries were: 1) concerns about adulthood (social functioning, satisfying work and financial independence, and finding supportive friends/a life partner), 2) mental health (appropriate social interactions, risk for depression, self-medication), 3) risks of being victimized or unknowingly hurting others, 4) the child’s skills deficits, and 5) inadequate resources for parents. Family, pediatric and mental health nurses should assess family life and the parents’ worries at each routine visit. The nurse should understand the conditions, reinforce positive parenting practices, and respond to parents’ needs with appropriate information and referrals. Nurses could become long-term mentors for learning disabled youth. Additional research on the lives of young adults with AS/NLD would help healthcare professionals understand their long term needs. (Little L, Clark RR. MCN. 2006;31(1):39-44. --J.O.
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